Dementia in Europe magazine issue 28, October 2018 by Alzheimer Europe

Issue 28 October 2018

Carlos Moedas

EU Commissioner for Research, Science and Innovation highlights current and future European priorities for dementia research

Olga Sehnalová

hosts Alzheimer Europe lunch debate on dementia care in Europe

Lena Hallengren

talks about Swedish Government’s decision to launch national dementia strategy

Ildefonso Fernández

outlines the political priorities of people with dementia in Spain

TABLE OF CONTENTS

Contents 3

Welcome by Iva Holmerová, Chairperson of Alzheimer Europe

Alzheimer Europe 4 9 12 13 16

European Parliament lunch debate focuses on dementia care in Europe Alzheimer Europe Carers’ Survey highlights significant barriers to timely diagnosis Developing intercultural dementia care and support for people from minority ethnic groups in Europe PARADIGM: Improving the engagement of patients in the process of developing medicines The EPAD project reports on significant progress in 2018

Contact Alzheimer Europe 14, rue Dicks L-1417 Luxembourg +352 29 79 70 +352 29 79 72 www.alzheimer-europe.org info@alzheimer-europe.org @AlzheimerEurope alzheimer.europe

Policy Watch 18 20 24 27 30 32

Providing European leadership in research and innovation – an interview with Carlos Moedas, EU Commissioner for Research, Science and Innovation The EU Joint Action on dementia: Collaborating among European countries to improve the lives of people with dementia and their carers Sweden announces decision to launch national dementia strategy Portugal makes significant advances in dementia policies French decision to stop the reimbursement of Alzheimer’s medicines comes under fire Quality of dementia care in OECD countries under the microscope

Dementia in Society 34 37 40 42

Patient and Public Involvement: Moving from proving to improving Eating well with dementia Dementia Friends: an initiative gaining support across Europe A look behind the headlines: What happens after the success of the first clinical trial of a disease-modifying treatment?

Spotlight on Spain 44 46 48 50 52

History and activities of CEAFA, the Spanish Alzheimer’s Confederation Fundación Alzheimer España: “We fight to be remembered” The political priorities of people with dementia in Spain Research on Alzheimer’s disease and other dementias in Spain Barcelona, a city of excellence in dementia research

Alzheimer Europe Board Chairperson: Iva Holmerová (Czech Republic) Vice-Chairperson: Charles Scerri (Malta) Honorary Secretary: James Pearson (UK – Scotland) Honorary Treasurer: Maria do Rosário Zincke dos Reis (Portugal) Members Stefanie Becker (Switzerland) Marie-Odile Desana (France) Sabine Henry (Belgium) Sabine Jansen (Germany) Sirpa Pietikäinen (Finland) Helen Rochford-Brennan (Ireland), European Working Group of People with Dementia (EWGPWD) Jesús Rodrigo (Spain) Štefanija Lukič Zlobec (Slovenia) Staff Jean Georges, Executive Director Christophe Bintener, Project Officer Cindy Birck, Project Officer Kate Boor Ellis, Communications Officer Ana Diaz, Project Officer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Owen Miller, Policy Officer Stefanie Peulen, Finance Officer Grazia Tomasini, Administrative Assistant Layout: The Publishing Bureau

Dementia in Europe

WELCOME

Welcome (EWGPWD) and his wife Jayne Goodrick, about their experiences of taking part in a recent PARADIGM project consultation.

Finally, at global level, Elina Suzuki, Health Policy Analyst at OECD discusses the main findings of the 2018 OECD report on the quality of dementia care.

We are also actively involved in the European Prevention of Alzheimer’s Dementia (EPAD) project. EPAD reports on its significant progress in 2018, including the launch of its proof-ofconcept platform and the development of new communication and branding tools.

Iva Holmerová, Chairperson of Alzheimer Europe

I am pleased to welcome you to the 28th edition of our Dementia in Europe magazine. The first section highlights some of our recent efforts to ensure dementia remains a European priority, including our recent lunch debate in the European Parliament, which focused on dementia care in Europe. During the debate, Mario Possenti, General Secretary of Federazione Alzheimer Italia, told delegates about the impact that a diagnosis of dementia has on families and carers in his country. Professor Bob Woods of Bangor University then presented the results of a survey carried out jointly with Alzheimer Europe in 2017, to better understand how diagnosis affects carers’ experiences of dementia. Given the importance of the survey’s findings, we have also included a separate article exploring them. I would like to personally thank our lunch debate hosts MEPs Olga Sehnalová (Czech Republic) and Sirpa Pietikäinen (Finland), as well as Nessa Childers (Ireland) for their active participation and Prof. Woods for his leadership in the carers’ survey project. Another area of our work is our involvement in European research projects and we are pleased to present the PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines) project in this edition. This project has the ambitious aim of making meaningful patient engagement in the development of medicines a reality. Supporting people with dementia to take part in research, if they want to, is an important aspect of our work. We spoke to Chris Roberts, Vice-Chair of the European Working Group of People with Dementia

In our Dementia in Society section, we take a look at Patient and Public Involvement (PPI), with the UK’s Alzheimer’s Society discussing experiences of involving people affected by dementia in research. The Society also presents its Dementia Friends programme. Finally in this Alzheimer Europe section, Cormac Cahill, Communications Manager our continued work in the field of ethics is for The Alzheimer Society of Ireland presents featured, with Director for Projects Dianne his organisation’s research into and camGove updating us on this year’s report topic: paign for eating well with dementia, and in dementia and minority ethnic groups. our Behind the Headlines article, Dr Anders Wimo from Karolinska Institutet looks at the The Policy Watch section opens with an challenges awaiting the introduction of new interview with Carlos Moedas, European Com- disease-modifying treatments for Alzheimer’s. missioner for Research, Science & Innovation since 2014. Mr Moedas gives us his perspective Our “special section” shines a spotlight on on providing European leadership in research our Spanish members, CEAFA (Confederand innovation. Also at European level, we ación española de Alzheimer) and Fundación take a look at the EU Joint Action on demen- Alzheimer España (FAE), co-hosts of our 28th tia, which is supporting collaboration among Alzheimer Europe Conference “Making demenEuropean countries to help improve the lives tia a European priority” #28AEC in Barcelona. of people with dementia and their carers. We also hear from Ildefonso Fernández, a member of CEAFA’s Expert Panel of People with At national level, we have heartening news Dementia (PEPA) who shares his personal expefrom both Portugal and Sweden. We speak riences with dementia and highlights some of to Alzheimer Europe Board member Maria the political priorities of the PEPA group. do Rosário Zincke dos Reis about the June 2018 launch of Portugal’s national demen- Finally, Adolfo Toledano from the Cajal Institia strategy. We also hear from Sweden, tute at the Spanish National Research Council where our Alzheimer Sverige colleague Karin and José Luis Molinuevo and Carolina MinWesterlund interviewed Minister Lena Hal- guillón from the Barcelonaβeta Brain Research lengren about her Government’s decision to Center and the Pasqual Maragall Foundation launch a strategy by 2022. Both Alzheimer give us an overview of Spain and Barcelona Portugal and Alzheimer Sverige have been as important centres for Alzheimer’s research. instrumental in bringing about these important developments and continue to work If you are reading this at the conference, I closely with their governments and other would like to welcome you to (hopefully) stakeholders to ensure people living with sunny Barcelona, where we will be focusing dementia are heard and represented at on policies and strategies, care approaches, national level. care services, rights, dementia-friendly societies, genetics, prevention and treatment. On a less positive note, France recently took the decision to stop the reimbursement of Enjoy the conference and our Dementia in Alzheimer’s medicines. We talk to Pierre Europe magazine! Krolak-Salmon, President of the French Federation of Memory Centres, about this controversial policy. Dementia in Europe

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European Parliament lunch debate focuses on dementia care in Europe Alzheimer Europe and the European Alzheimer’s Alliance organised a lunch debate in the European Parliament which was hosted by MEPs Olga Sehnalová (Czech Republic) and Sirpa Pietikäinen (Finland). On Tuesday 26 June 2018, an Alzheimer Europe lunch debate was organised in the European Parliament, focusing on the topic of “Dementia Care in the European Union”. The debate was opened by Olga Sehnalová MEP, who welcomed over 70 delegates from national Alzheimer’s associations, as well as members of the European Working Group of People with Dementia (EWGPWD) and representatives from different EU institutions, organisations and companies. According to Olga Sehnalová, current estimates suggest that over nine million European citizens have a form of dementia and that the majority of people with dementia live at home, in the community or are cared for by their families. It was noted that caring for a loved one with dementia poses many challenges for

He stressed the need for greater information, training and support for informal carers in order to break the social isolation experienced by many of them, which requires the implementation of a series of specific interventions, fully embedded within the community, including psychosocial therapies and respite care services. The experience of a diagnosis of dementia in five European countries

Professor Bob Woods, from Bangor University in Wales, presented the results of Alzheimer Europe’s carers’ survey (see pages 9–11 for families and carers and that for that reason, additional details on the survey results), the lunch debate would look at dementia care carried out in 2017 by Alzheimer Europe in the European Union from the perspective of and Bangor University to better understand how diagnosis affects carers’ experiences of both carers and relevant areas of policy. dementia. The study investigated the expeCaring for a person with dementia in Italy riences informal carers had upon receiving a formal diagnosis in five European countries Mario Possenti, the General Secretary of Fed- (Czech Republic, Finland, Italy, Netherlands erazione Alzheimer Italia highlighted the and Scotland, UK). personal impact that a diagnosis of Alzheimer’s disease has on family members and Thanks to the support of participating carers not only on an emotional level (feel- organisations in each of the five countries, ings of stress, depression, fear and anger), but over 1,400 participants took part in the suralso on a physical, social and economic level. vey. The majority of respondents (82.8%) He highlighted that many carers felt socially were women, had a median age of 57 and isolated due to the burden of everyday care, over half of them (51.5%) had college educaas well as the existing stigma associated with tion or higher. Apart from the Netherlands, dementia and the conflict that sometimes the majority of carers were the children arises between family members. (daughters) of the person with dementia. Interestingly, 7.8% of respondents reported that they were not in employment due to their role as a carer. The majority of people with dementia who were being cared for were also women (61%) and had a median age of 77. According to the carers, the majority of people (53%) had been diagnosed at the mild stage of dementia, 36% had been diagnosed with moderate dementia and 4% with advanced dementia.

Mario Possenti (Italy) highlights impact of dementia on family carers

4 Dementia in Europe

In addition, carers reported significant delays in receiving a diagnosis (overall time frame from point of a problem being noticed to the diagnosis being made); it took an average of 2.1 years to receive the diagnosis (ranging from 1.6 years in the Czech Republic and Italy to 2.6 years in the Netherlands). The findings showed that a quarter of the people with dementia had been diagnosed with another condition prior to dementia and that almost

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Professor Bob Woods presents survey results

half of the carers (47%) felt that the diagnosis would have been better earlier (ranging from 36.5% in the Netherlands to 52.1% in Italy).

taken for people to get a diagnosis and that the proportion of people thinking that a diagnosis should have been made earlier did not differ according to whether the diagnosis had been made before or after 2013.

Post-diagnostic support in Europe

Prof. Woods also presented the type of information carers had received after the Barriers to timely diagnosis diagnosis. The most frequent types of information related to drug treatments (56%), Amongst the key identified barriers to receiv- Another interesting finding of the project was dementia itself (48%), disease progression ing an earlier diagnosis, carers reported the the differences between countries with regard (38%) and Alzheimer’s associations (38%). first professional seen not considering that to whether the person with dementia had Carers reported that they would have liked anything was wrong (33%), had not believed been informed about the diagnosis. Whilst to have received information on more practhat it was worth pursuing a diagnosis (6.6%) this was the case in the overwhelming major- tical coping strategies and living well with or that the person with dementia had refused ity of cases in Finland (99%), the Netherlands dementia (51%), as well as what services to seek help (37.9%). (92%) and Scotland, UK (96%), the percentage were available for them (46%). was lower in the Czech Republic (77%), while Prof. Woods highlighted that there had been in Italy, only a minority of people (41%) had On the whole, the list of services carers had little change in relation to the time it had been informed about their diagnosis. been able to access in the 6 months after

Olga Sehnalová, MEP (Czech Republic) “As a Member of the European Parliament and the European Alzheimer’s Alliance, I am interested in how European countries differ in their approach to dementia. Despite the growing recognition of dementia as a public health priority and the development of national dementia strategies, the Alzheimer Europe survey highlighted that barriers to timely diagnosis continue to exist. Although

in the Czech Republic, the time to diagnosis is relatively short compared to other countries, we cannot consider it a success that it takes more than a year and half. I hope that EU initiatives such as the EU Joint Action on Dementia will identify good practice and make recommendations on how to improve timely diagnosis and post-diagnostic support across all European countries.”

Dementia in Europe

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diagnosis (and those they would have liked to have accessed) indicated that there was considerable unmet need. One third of carers were able to access a named contact person or service whereas an additional 38% of carers would have wanted to access such a service. For other services, the situation was worse, with only 12% of people receiving counselling services, whilst 43% would have wanted to access such a service. In relation to training, 11% of people had accessed such a service, with 41% wishing they been able to use such a service. In conclusion, Professor Woods highlighted the continuing obstacles to timely diagnosis, the country differences in the sharing of the diagnosis and the significant unmet needs in the provision of information and post-diagnostic services. He therefore recommended the continuation of awareness raising and education initiatives.

Alzheimer Europe Vice-Chair Charles Scerri thanks speakers and participants

The pillar provides 20 principles grouped under three main headings:

beyond a simple revision of the maternity leave directive.

1. Equal opportunities and access to the labour market. 2. Fair working conditions. 3. Adequate and sustainable social protection.

One of the proposals would therefore be to introduce a right to carers’ leave through a new European directive. The proposal would provide the right to carers’ leave of up to 5 days per year which would be compensated at the same level as sick pay, open for people caring for a dependent relative with a serious illness, serious medical condition or disability.

The role of the European Union in support- Promoting work-life balance through the ing carers introduction of carers’ leave and flexible working arrangements The next speaker at the lunch debate was Sarah Schinazi from the European Commis- The content and ambition of the Eurosion’s Directorate General for Employment, pean Pillar of Social Rights build on a large Social Affairs and Inclusion, who spoke about number of Commission initiatives in the how the European Union can support carers. employment and social field. Sarah Schinazi Specifically, she highlighted the importance singled out work-life balance and long-term of the European Pillar of Social Rights, which care as being particularly relevant for the was jointly proclaimed by the European Par- discussion on carers’ rights and support. liament, the Council and the Commission on The key objective of the work-life balance 17 November 2017 at the Gothenburg Social initiative is to address women’s underrepSummit for Fair Jobs and Growth. resentation in the labour market and to go

Sarah Schinazi highlights role of EU for carers

6 Dementia in Europe

In addition, the proposal for a directive aims to introduce the right to request flexible working arrangements. This right would be open to parents of children up to the age of 12, but also to carers who can request reduced working hours, flexible working hours or flexibility on the place of work. In its Communication, which supplements the proposed directive, the Commission also identified “improving access to care services” as one of the three policy areas which should be addressed. This would be done through a combination of tools to support Member States, such as a better collection of EU-level data, better monitoring guidance and benchmarking through the European Semester and the sharing of good practice in this field. Furthermore, it was indicated that funding through European programmes such as European Structural and Investment Funds (ESIF), the European Social Fund (ESF) and the European Commission’s Programme for Employment and Social Innovation (EaSI), could also support this work. During the ensuing discussions, Nessa Childers MEP (Ireland) questioned how the European Union could support a greater

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gender balance when it comes to people caring for older people as she was particularly struck by the fact that over 80% of the respondents of the carers’ survey had been women. In her closing comments, Sirpa Pietikäinen MEP (Finland) highlighted some of the findings of the carers’ survey had identified and was satisfied that in Finland, people were informed and involved during the diagnostic process. However, the delays for a diagnosis remained too long, as with other countries. As a Member of the European Parliament, she also welcomed the initiative of the European Commission to promote a better work-life balance and hoped that Member States would support the right to carers’ leave proposed by the Commission.

Sirpa Pietikäinen, MEP (Finland) and Vice-Chairperson of the European Alzheimer’s Alliance “I was delighted to see that people with dementia in Finland were systematically informed about their diagnosis and included in care planning decisions. Despite this, the delays before receiving a formal diagnosis on dementia remain significant. Across Europe, we need to continue to invest in awareness raising campaigns targeted at the general public, medical training of general practitioners and specialists, and address some of the system delays when it comes to referrals and access to diagnostic services.”

Nessa Childers, MEP (Ireland) raises impact of care on women

Dementia in Europe

At Roche, we work with a purpose.

We discover and develop innovative medicines and diagnostic tests to help people live better, longer lives.

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Alzheimer Europe Carers’ Survey highlights significant barriers to timely diagnosis The highlights of Alzheimer Europe’s survey of carers’ experiences of dementia in five European countries were presented at the European Parliament lunch debate on 26 June (see previous article). Some of the policy implications of the findings are included in this article. Diagnosis is crucial for people with dementia and their families and this premise served as the basis for the Alzheimer Europe survey, which received responses from 1,409 informal carers in five European countries (Czech Republic, Finland, Italy, Netherlands and Scotland, UK), sharing their experiences of the diagnostic process.

in this timeframe were apparent in the most recent years (see figure 1). Differences were also present between the countries surveyed (see table 1). The findings showed that it often takes a longer period of time for people to seek help after noticing the first symptoms. The Czech Republic seemed to perform particularly well in this area and several carers had a very short period of time between identifying a problem and assessments being carried out (including visiting specialist clinicians). Across all surveyed countries, general practitioners (GPs) continue to be the healthcare professionals from whom carers first seek help.

to memory problems/confusion. This is the same finding that was reported in the carers’ survey conducted by Alzheimer Europe in 2006. Furthermore, as in 2006, the survey highlighted that difficulties with activities of daily living, difficulties with communication and issues related to mobility (e.g. travelling, driving) continued to be significant issues which were frequently experienced and acted The overall conclusion of this study is that as triggers for help-seeking. This is imporwhilst some aspects related to diagnosis may tant as dementia is frequently portrayed as be improving, we could not identify a clear a memory condition: this should be taken change in the experience of receiving a diag- into account when raising awareness about nosis of dementia, over the last decade. In dementia and promoting timely diagnosis. addition, it is evident that post-diagnostic support continues to be a major issue across Delays to diagnosis remain considerable Europe, with a number of key differences in the experience of diagnosis and post-diag- According to the survey results, it took an nostic support in different countries. average of 2.1 years to receive a diagnosis (from the point where the carer noticed a The findings of the survey showed that the problem). This is almost the same figure that most common first indication of a prob- was reported in a similar study in 2005 (“Faclem (which prompted help-seeking) related ing Dementia” study). No relevant differences

A significant change can be seen in where people receive their diagnosis. Whereas in 2006 as many people were diagnosed in hospital as by their GP, this no longer seems to be the case. Diagnoses are now more frequently made in a memory clinic or outpatient service of a hospital, with only a small proportion of people being diagnosed by GPs. Most carers reported that the person with dementia had undergone memory tests, interviews and brain scans. As would be expected, lumbar punctures were less common, however, these were slightly more frequent in the Netherlands. The number of people with dementia in the Czech Republic who had a brain scan was much lower than in any other country.

A significant number of carers reported that the person had been diagnosed with another condition prior to dementia, which reinforces

Figure 1: Mean length of time for diagnosis (n=1232)

Table 1: Overall mean length of time by country

Misdiagnosis of other conditions prior to dementia diagnosis remains an issue

3.0 2.5 2.0 1.5 1.0 0.5 0.0

2016

2015

2014

2013

2012

2011

2010

2009

2008

2007

2006

2005

Before 2005

Czech Republic Finland Italy Netherlands UK (Scotland) Total

Mean length of time (years)

1.6

185

2.2 1.6 2.6

332 265 255

2.5

205

2.1

1242

Dementia in Europe 9

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what we have often heard from people with dementia and carers, who have told us about how distressing this can be. Depression was one of the most frequent conditions with which people with dementia were diagnosed prior to the diagnosis of dementia.

everything clearly and had established a good relationship with the person with dementia.

We know that receiving a diagnosis can be a lifechanging experience and this was reflected by the majority of carers reporting that they were worried about the future. Many carers The majority of people had received a diagno- and people with dementia felt sad at the time sis within the five years prior to completing of diagnosis, however, after some time, whilst the survey. An important and positive find- many still had sad emotions, other more posiing is that two thirds had been diagnosed at tive feelings such as acceptance also emerged. early stages (mild dementia or Mild Cognitive Overall, the negative emotions tended to be Impairment) and only 4% had received the less prevalent after a period of time. diagnosis at advanced stages. However, the majority of carers would have preferred an Information at time of diagnosis is often earlier diagnosis (see figure 2). This was more lacking frequent as the severity of dementia increased. One of the main gaps identified in the 2006 Huge differences exist across Europe with survey was that many carers (19%) had not regard to the disclosure of diagnosis to the received any type of information at the time person with dementia of diagnosis. This finding was identical in 2017, where 19% of the carers again reported that One in five people with dementia were not they had not received any information. In the informed about their diagnosis. However, case of people with dementia, this percentconsiderable variation exists between the age was even higher (27.9%). countries. In Italy, the majority of people with dementia had not been informed about The majority received information on medical their diagnosis (see figure 3) which directly aspects and pharmacological treatment but went against the expressed wish of the per- information on psychosocial aspects was not son with dementia in all but a few cases. often provided, with information about participation in research being the least commonly A positive finding was that when diagnosis provided. The provision of information about was disclosed, carers seemed to be quite sat- available services was also relatively low overisfied about the way in which it had been done. all. Despite this, almost every carer reported Important aspects included the feeling that using different sources of information to keep the doctor was well prepared, had explained up to date on dementia, especially from online

sources. In addition, the findings showed that the role of Alzheimer associations in providing information was very important. The survey has highlighted several unmet needs in the area of provision of information and access to services and supports. The need for information on coping and living well with dementia, as well as the available services was demonstrably high. In particular, many carers reported not having access to an assessment of their own needs, a care plan for the person with dementia or access to counselling services, but would have liked to have used all of these services. The majority of the carers shared the diagnosis with other people, though this tended to be with close family and less so with close friends. Importantly, many carers felt that the person with dementia was still valued and respected by other people, particularly within their own families. Fewer people had shared the diagnosis with other people in their communities and often felt that after the diagnosis, the person with dementia was no longer able to carry on with community activities and roles. Furthermore, loneliness as a consequence of their role as a carer was frequently reported. Unmet needs identified in the AE survey In conclusion, findings from the survey present a range of positive and negative experiences of carers. Whilst the time to receive a diagnosis has not substantially changed in

Figure 2: Perception of timeliness of diagnosis by country (n=1163) 100

56.5%

52.2%

60.3%

40.4%

53.8%

Should have been made earlier

Made at the right time

Made too soon

70 57.9%

60 50

43.5%

47.8%

45.2% 38.0%

40 30 20 10 0

1.7%

1.0%

Czech Republic (n=104)

Finland (n=335)

Italy (n=287)

Netherlands (n=240)

UK (Scotland) (n=197)

10â&#x20AC;&#x192; Dementia in Europe

Foundation Compassion Alzheimer Alzheimer Foundation Compassion BELGIUM – BRUSSELS Ligue Nationale Alzheimer Liga CYPRUS LARNACA AUSTRIA ––– VIENNA AUSTRIA VIENNA Alzheimer Austria Austria Alzheimer Pancyprian Alzheimer Association ALZHEIMER EUROPE BOSNIA & HERZEGOVINA - SARAJEVO CROATIA – ZAGREB ZAGREB CROATIA – Udruženje AiR BELGIUM –– BRUSSELS BRUSSELS Alzheimer Croatia BELGIUM Alzheimer Croatia Ligue Nationale Nationale Alzheimer Liga Liga Ligue Alzheimer CZECH REPUBLIC – PRAGUE BULGARIA – SOFIA Alzheimer Bulgaria Czech BOSNIAAlzheimer’s & HERZEGOVINA HERZEGOVINA --Society SARAJEVO BOSNIA & SARAJEVO Udruženje AiR CYPRUS LARNACA Udruženje AiR CYPRUS –– LARNACA support to BULGARIA ensure that information and sup- VARNA Pancyprian Alzheimer Association Alzheimer Association Foundation Compassion port on Pancyprian relevant aspects suchAlzheimer as advance BULGARIA – SOFIA BULGARIA – SOFIA care planning, legal rights, driving and, in DENMARK – HELLERUP Alzheimer Bulgaria Alzheimer Bulgaria particular,CROATIA opportunities to take part in – ZAGREB Alzheimerforeningen research, is better incorporated into the Alzheimer Croatia CZECH REPUBLIC PRAGUE BULGARIA VARNA CZECH REPUBLIC –– PRAGUE BULGARIA -- VARNA diagnostic process, for both people with Foundation Compassion Alzheimer Alzheimer Czech Alzheimer’s Society Foundation Compassion dementia and their carers. Czech Alzheimer’s Society CYPRUS – LARNACA FINLAND – HELSINKI Pancyprian Alzheimer Association CROATIA ZAGREB Too many carers still have unmet needs with CROATIA –– ZAGREB Muistiliitto Alzheimer Croatia Croatia Alzheimer regard to information and support during DENMARK – and HELLERUP CZECH REPUBLIC – PRAGUE DENMARK HELLERUP the diagnostic process– thereafter. The Czech Alzheimer’s Society Alzheimerforeningen associated emotions (including sadness and CYPRUS – LARNACA Alzheimerforeningen CYPRUS – LARNACA Pancyprian Alzheimer Association Whilst loneliness)Pancyprian must also be addressed. Alzheimer Association FRANCE – HELLERUP PARISevident in many DENMARK positive changes are–already Alzheimerforeningen Association France communities, further work mustAlzheimer continue CZECH REPUBLIC REPUBLIC –– PRAGUE PRAGUE CZECH FINLAND – HELSINKI HELSINKI around awareness raising and to ensure comCzech Alzheimer’s Society FINLAND – Czech Alzheimer’s Society Europe M munitiesMuistiliitto are moreAlzheimer FINLAND –inclusive HELSINKI for people with Muistiliitto Muistiliitto dementia and their carers. DENMARK –– HELLERUP HELLERUP DENMARK GERMANY – BERLIN Alzheimerforeningen Alzheimerforeningen Deutsche Alzheimer Gesellschaft e. FRANCE – PARIS Alzheimer Europe M FRANCE – PARIS Association France Alzheimer FRANCE PARIS FINLAND –––HELSINKI HELSINKI FINLAND Alzheimer Europe Members Association France Alzheimer Muistiliitto Association France Alzheimer Muistiliitto GERMANY – BERLIN GREECE – THESSALONIKI HUNGARY Deutsche Alzheimer Gesellschaft e.V. 4.4% Europe Members FRANCEAlzheimer – PARIS PARIS FRANCE – Panhellenic Federation of Alzheime Hungarian Alzheimer Society Association France Alzheimer No Association France Alzheimer 95.6% GERMANY – BERLIN Alzheimer Europe M GERMANY – Related BERLIN Disorders Disease GREECE – and THESSALONIKI HUNGARY Alzheimer Europe M Yes PanhellenicAlzheimer Federation of Alzheimer’s Deutsche Alzheimer Gesellschaft e. e. Hungarian Society Deutsche Alzheimer Gesellschaft GERMANY BERLIN Alzheimer Europe Members GERMANY –– Related BERLIN Disease and Disorders GREECE – THESSALONIKI Alzheimer Europe Members Deutsche Alzheimer Alzheimer Gesellschaft e.V. e.V. ICELAND - REYKJAVIK Deutsche Gesellschaft GREECE – THESSALONIKI ICELAND - REYKJAVIK Panhellenic of Alzheime HUNGARY –Federation BUDAPEST The Alzheimer’s Association of Icela Panhellenic of Alzheimer’s HUNGARY –Federation BUDAPEST The Alzheimer’s Association of Iceland Alzheimer Europe Members Alzheimer Europe M GREECE – THESSALONIKI Social Cluster Association Disease and Related Disorders GREECE THESSALONIKI Social Association GREECECluster – and THESSALONIKI Disease Related Disorders GREECE ––Federation THESSALONIKI Alzheimer Europe Members Panhellenic Federation of Alzheimer’s Alzheimer’s Panhellenic of Alzheimer Europe M Panhellenic Federation of Alzheime Alzheime Disease and Related Disorders IRELAND – REYKJAVIK DUBLIN ICELANDand Disease Related Disorders Panhellenic Federation of ICELAND ---REYKJAVIK ICELAND REYKJAVIK The Alzheimer’s Alzheimer Society of Ireland The Association of Iceland Disease and RelatedofofDisorders Disorders The Association Iceland IRELAND – REYKJAVIK DUBLIN TheAlzheimer’s Alzheimer’s Association Iceland ICELAND Disease and Related ICELAND ---REYKJAVIK ICELAND REYKJAVIK The Alzheimer Society of Ireland The Alzheimer’s Association of Icela ICELAND REYKJAVIK ISRAEL – RAMAT GAN Association of Icela The Alzheimer’s IRELAND –-DUBLIN DUBLIN IRELAND – The Alzheimer’s Association of Icela IRELAND –- REYKJAVIK DUBLIN ICELAND The Alzheimer’s Association of Iceland EMDA – The Alzheimer’s Association of

Our members are helping people with dementia and their Our members are helping carers in 34 5 countries people with dementia and their Our members are helping Our members are helping carers in 32 countries Our members are helping people with dementia and their people with dementia and their Our members are helping people with dementia and their Our members are helping Our members are helping carers in 32 countries carers in 34 countries 5 people with dementiaand and their carers in 32 countries people with dementia their Our members are helping Our members are helping people with dementia carers in 32 countriesand their people with dementia dementia and their their people with and Our members are helping carers in 32 countries Our members are helping carers in 32 countries carers in 32 countries carers 32 countries peoplein with dementia and and their their people with dementia the last decade, it appears more people are being diagnosed by specialist services, with many places now using technology such as brain scans as part of the diagnostic process.

carers seemed more open to sharing the diagnosis with other members of the community. However, the finding that in Italy, the majority of people who were diagnosed were not informed of their condition is perhaps The findings highlighted the important differ- evidence of significant cultural differences ences in the experience of diagnosis based on between countries. the country where a person lives, with Italy and the Czech Republic having the shortest times There is a clear need across all countries for for diagnosis and people with dementia in Italy better involvement of people with demenhaving good access to diagnostic tests. tia in the full diagnostic process. We believe that every person with dementia should be More people than in 2006 were informed of given the opportunity to decide whether or their diagnosis and it appears that doing so is not he/she wants to know the diagnosis and common practice in most countries. Finland, who should be part of the process. the Netherlands and the UK (Scotland) were particularly good at disclosing the diagno- Furthermore, there is an identified need for sis to people with dementia and, in general, more work in relation to post-diagnostic

Figure 3: Diagnosis shared with person with dementia by country (n=1400)

100

23.3%

carers in in 32 32 countries countries carers

ALBANIA ALBANIA –1.1% TIRANA ALBANIA AlzheimerAlbania Albania Alzheimer Albania 98.9% Alzheimer

90 80 70 60 50 40 30 20

76.7%

AUSTRIA – VIENNA Alzheimer Austria

HUNGARY Hungarian Alzheimer Society

5.8%

ALBANIA ALBANIA – TIRANA ALBANIA AlzheimerAlbania Albania Alzheimer Albania Alzheimer

91.8%

AUSTRIA – VIENNA Alzheimer Austria

HUNGARY Hungarian Alzheimer Society

BELGIUM BRUSSELS AUSTRIA –– VIENNA

AUSTRIA – VIENNA Ligue Nationale Alzheimer Liga 40.7% Alzheimer Austria

BELGIUM BRUSSELS Alzheimer Austria AUSTRIA –– VIENNA AUSTRIA – VIENNA Ligue Nationale Alzheimer Liga Alzheimer Austria AUSTRIA&––HERZEGOVINA VIENNA BOSNIA - SARAJEVO BELGIUM BRUSSELS Alzheimer Austria BELGIUM BRUSSELS AUSTRIA VIENNA Alzheimer––Austria Udruženje AiR Ligue Nationale Alzheimer Liga Ligue Nationale Alzheimer Liga Alzheimer Austria

10 0

59.3%

BELGIUM AUSTRIA&––HERZEGOVINA VIENNA –BRUSSELS SOFIA BOSNIA -BULGARIA SARAJEVO BOSNIA &–HERZEGOVINA - SARAJEVO BELGIUM BRUSSELS Finland Italy Nationale Netherlands BOSNIA &–Bulgaria HERZEGOVINA -Liga SARAJEVO BELGIUM BRUSSELS Ligue Alzheimer Alzheimer Udruženje AiR BELGIUM –Austria BRUSSELS (n=363) (n=332) (n=268) AUSTRIA – VIENNA Alzheimer Udruženje AiR Udruženje AiR Alzheimer Liga Ligue Nationale Alzheimer Ligue LigaNationale Ligue Nationale Alzheimer Liga Alzheimer Austria

Czech Republic (n=210)

Acknowledgements BELGIUM ––BRUSSELS BULGARIA SOFIA

BOSNIA & HERZEGOVINA - SARAJEVO BULGARIA -– VARNA BULGARIA SOFIA BULGARIA –Compassion SOFIA BOSNIA & Bulgaria HERZEGOVINA - SARAJEVO Udruženje AiR Foundation Alzheimer Alzheimer Alzheimer Udruženje Bulgaria AiR

TheAlzheimer Alzheimer Societyof of Ireland The AlzheimerSociety Society ofIreland Ireland The Alzheimer’s Association of Iceland Israel

IRELAND – DUBLIN ICELAND REYKJAVIK ISRAEL –RAMAT RAMAT ISRAEL GAN GAN IRELAND –-DUBLIN DUBLIN ISRAEL –––RAMAT GAN ISRAEL RAMAT GAN of Ireland IRELAND – DUBLIN The Alzheimer Society IRELAND – ITALY – MILAN EMDA – The Alzheimer’s Associationof of IRELAND – DUBLIN ICELAND REYKJAVIK EMDA – The Alzheimer’s Association The Alzheimer’s Association of Icela EMDA The Alzheimer’s Associatio EMDA ––The Alzheimer’s Association The Alzheimer Society of Ireland ofof Federazione Alzheimer Italia The Alzheimer Society Ireland Israel Israel The Alzheimer Society of Ireland Israel Alzheimer Society of Ireland The Alzheimer’s Association of Icela Israel ISRAEL – RAMAT GAN

UK (Scotland) (n=227)

ISRAEL RAMAT GAN Association of EMDA –––MILAN The Alzheimer’s ITALY ROME ITALY ITALY ITALY MILAN EMDA TheUniti Alzheimer’s Association of Israel ––MILAN Alzheimer Onlus Italia Federazione Alzheimer Federazione FederazioneAlzheimer AlzheimerItalia Italia Israel

IRELAND – DUBLIN BOSNIA & HERZEGOVINA - SARAJEVO ISRAEL –RAMAT RAMAT GAN ISRAEL – GAN BULGARIA – SOFIA CROATIA – ZAGREB BOSNIA &–Bulgaria HERZEGOVINA -BULGARIA SARAJEVO ISRAEL –MILAN RAMAT GAN of Ireland BELGIUM BRUSSELS IRELAND – DUBLIN Ligue Nationale Alzheimer Liga The Alzheimer Society Alzheimer - VARNA ITALY – AiR the carers fromBULGARIA EMDA ––ROME The Alzheimer’s Associatio VARNA Alzheimer EuropeUdruženje would like to thank the five Croatia countries who participated in this surveyEMDA and made research possible. –-Compassion SOFIA Bulgaria ITALY MILAN Alzheimer JERSEY STthis HELIER The Alzheimer’s Association Foundation Alzheimer ITALY ––– ITALY –– ROME Udruženje AiR EMDA The Alzheimer’s Associatio Ligue Nationale Alzheimer Liga The Alzheimer Society of Foundation Compassion Alzheimer ROME Alzheimer Bulgaria ITALY – MILAN Federazione Alzheimer Italia Federazione Alzheimer Italia Jersey Association We are indebted to Professor Bob Woods from Bangor University for his leadership in this project andIsrael to our Alzheimer’s colleagues from the five Ireland Alzheimer UnitiOnlus Onlus Alzheimer Israel AlzheimerUniti Uniti Onlus Italia Federazione Alzheimer Israel grant provided by Roche, participating Alzheimer’s associations for their contributions. We also gratefully acknowledge the educational BULGARIA -ZAGREB VARNA CYPRUS ––LARNACA CROATIA which allowed Alzheimer Europe to carry out and analyse this survey. CROATIA – ZAGREB BULGARIA VARNA Foundation Compassion Alzheimer ITALY ––ROME Alzheimer Association BOSNIA & HERZEGOVINA -Pancyprian SARAJEVO ISRAEL – HELIER RAMAT GAN BULGARIA -– VARNA LUXEMBOURG – LUXEMBOURG Alzheimer Croatia JERSEY ST HELIER BULGARIA SOFIA JERSEY ––ROME ST Alzheimer Croatia JERSEY STUniti HELIER Foundation Compassion Alzheimer ITALY –Alzheimer’s Alzheimer Onlus Association Luxembourg Alzheimer Jersey Association BULGARIA – SOFIA BOSNIA & Bulgaria HERZEGOVINA - SARAJEVO ISRAEL RAMAT GAN Associatio Jersey Association RAPPORT ALZHEIMER Udruženje AiR EMDA The Alzheimer’s Foundation Compassion Alzheimer ITALY ––ROME JerseyAlzheimer’s Alzheimer’s Association Alzheimer Uniti Onlus Alzheimer ITALY MILAN ET MÉDITERRANÉE 2016 ––MILAN ITALY CROATIA – ZAGREB CZECH REPUBLIC – PRAGUE Alzheimer Bulgaria ITALY – MILAN CYPRUS – LARNACA Udruženje AiR EMDA TheUniti Alzheimer’s Associatio Israel Alzheimer Onlus Italia CYPRUS ––LARNACA Federazione Alzheimer CROATIA ZAGREBSociety Alzheimer Croatia JERSEY – ST HELIER Czech Alzheimer’s MALTA MSIDA Pancyprian Alzheimer Association LUXEMBOURG –Alzheimer LUXEMBOURG Italia Federazione LUXEMBOURG – LUXEMBOURG Federazione Alzheimer Italia Pancyprian Alzheimer Association LUXEMBOURG – LUXEMBOURG Alzheimer Croatia JERSEY – ST Luxembourg HELIER Israel Jersey Dementia Alzheimer’s Association Malta Society Association Alzheimer Association Luxembourg Alzheimer Association Luxembourg Alzheimer Jersey Alzheimer’s Association BULGARIA – SOFIA CROATIA CYPRUSREPUBLIC – LARNACA DENMARK – HELLERUP BULGARIA– -ZAGREB VARNA CZECH – PRAGUE CZECH REPUBLIC – PRAGUE CYPRUS – LARNACA Pancyprian Alzheimer Association LUXEMBOURG – LUXEMBOURG Alzheimerforeningen VARNA MONACO – ST MONTE-CARLO BULGARIA – SOFIA Alzheimer Bulgaria ITALY MILAN Croatia Czech Alzheimer’s Society MALTA –MSIDA MSIDA JERSEY –MSIDA HELIER MALTA –– Foundation Compassion Alzheimer ITALY ROME Czech Alzheimer’s Society MALTA –Association Pancyprian Alzheimer Association LUXEMBOURG –Society LUXEMBOURG Association Luxembourg Alzheimer AMPA -– Monégasque pour ITALY – ROME Malta Dementia Malta Dementia Society FoundationBulgaria Compassion Alzheimer ROME Alzheimer ITALY – MILAN Federazione Alzheimer Italia Malta Dementia Society Association Luxembourg Alzheimer Jersey Alzheimer’s Association la recherche sur la maladie d’Alzheimer Alzheimer Uniti Onlus Dementia in Europe 11 CZECH REPUBLIC – PRAGUE Alzheimer Uniti Onlus FINLAND – HELSINKI DENMARK – HELLERUP Alzheimer Uniti Onlus Federazione Alzheimer Italia DENMARK – HELLERUP CZECH REPUBLIC – PRAGUE Czech Alzheimer’s Society MALTA – MSIDA Muistiliitto Alzheimerforeningen MONACO––MONTE-CARLO MONTE-CARLO MONACO Alzheimerforeningen MONACO – MONTE-CARLO Czech Alzheimer’s Society MALTA –Association MSIDA Malta -Dementia BULGARIA - VARNA NETHERLANDS –Society AMERSFOORT CYPRUS – LARNACA AMPA Monégasque pour ÉTAT DES LIEUX - ENJEUX - PERSPECTIVES

Auteurs Salomé Nicaise, Federico Palermiti, Association Monégasque pour la recherche sur la maladie d’Alzheimer (AMPA)

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Developing intercultural dementia care and support for people from minority ethnic groups in Europe Dianne Gove, Alzheimer Europe’s Director for Projects gives an overview of the organisation’s current work on dementia and minority ethnic groups. In keeping with ongoing efforts to promote the rights and wellbeing of people with dementia, Alzheimer Europe is currently working on a project to improve intercultural care and support for people with dementia and informal and professional carers from minority ethnic groups. This work is funded through an operating grant of the health programme of the European Commission and an educational grant of the Robert Bosch Stiftung.

dementia, know where to get information, benefit from accurate and timely diagnosis and receive appropriate and good quality care and support. This does not always happen. People from minority ethnic groups often lack knowledge about dementia and available services, are frequently misdiagnosed and typically have a low uptake of dementia services.

An expert working group has been set up to promote the development of intercultural Dementia can be disabling, preventing care and support across Europe, for which people from participating in society on an Alzheimer Europe liaised with representatives equal basis with others. As emphasised in of its national member organisations and last year’s work on disability and demen- its European Working Group of People with tia, according to the social and rights-based Dementia to identify ongoing initiatives, promodels of disability, barriers to equal par- jects and good practices. ticipation in society do not reside solely in the individual but are also the result of Members of the expert group (see text box the way that society is organised (includ- for all names) have extensive expertise and ing attitudes, practices, physical structures experience in intercultural dementia service and procedures). development and identified a number of key issues for further exploration. These include, Reasonable accommodations must be made amongst others, the need for culture-sento maximise the potential of people with sitive assessment and diagnostic tools, an disabilities (including dementia) to partici- understanding of how different perceptions pate in society on an equal basis with others. of dementia affect help seeking, filial piety, However, when determining what is “reason- gendered care roles, lack of trust in health able”, there is a risk of this being based on the and social care providers, experiences of steneeds and wishes of the main ethnic group reotyping and prejudice, stigma, language and not on those of people with dementia difficulties and issues of relevance to migrant from minority ethnic groups. and live-in carers. Intercultural care and support is not merely about services that are adapted to the needs and wishes of people from different ethnic groups but also closely linked to people understanding and respecting cultural and linguistic diversity. This means ensuring that people from all ethnic groups are aware of 12

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Stereotypes and assumptions (e.g. people from minority ethnic groups “look after their own” and don’t want any support) are still common but things are gradually changing. The expert working group will produce a report, recommendations (targeted mainly at policy makers and service providers) and a

Expert group meeting in Amsterdam (22 August 2018)

database of good practices. These should be available at the end of 2018. The report will be translated into French and German at the beginning of 2019.

Expert group members Dianne Gove, Alzheimer Europe, Luxembourg (Chair) Jean Georges, Alzheimer Europe, Luxembourg Daphna Golan Shemesh, Alzheimer Association of Israel Michal Herz, University of Worcester, United Kingdom Siiri Jaakson, ETNIMU project, Finland Ripaljeet Kaur, BME Dementia Service, Touchstone, United Kingdom Debi Lahav, Alzheimer Association of Israel Sahdia Parveen, University of Bradford, United Kingdom Charlotta Plejert, Linköping University, Sweden Mohammed Akhlak Rauf, Meri Yaadain Dementia, United Kingdom Thomas Rune Nielsen, Rigshospitalet Copenhagen, Denmark Carolien Smits, Windesheim University, Netherlands

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PARADIGM: Improving the engagement of patients in the process of developing medicines Alzheimer Europe reports on its involvement in and expectations from the PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines) project. There is a growing interest in and consensus on the relevance of engaging patients throughout the lifecycle of medicines development. On the one hand, patients’ views, expectations and experiences are crucial as they are living with the medical condition, experiencing the symptoms and will be the people taking the medicines as part of their treatment. On the other hand, there is increasing evidence that patients’ input and collaboration can also bring important benefits for those developing the medicines or involved in this process. Despite this, patients continue to be a largely underutilised resource in medicines development. While there are many initiatives emerging to involve and engage with patients, inconsistency and fragmentation remain the norm. With this in mind, the PARADIGM project was launched on 1 March 2018 with the ambitious aim of making meaningful patient engagement in the development of medicines a reality. Within the medicines lifecycle, the project focuses on patient engagement at three key decision-making points: 1. research priority setting, 2. design of clinical trials and 3. early dialogues with regulators and health technology assessment (HTA) bodies. Patient engagement tools and metrics The project will develop a framework that will enable structured, effective and sustainable patient engagement. This will include: y A set of comprehensive tools and practices for implementing patient engagement y Agreed metrics to measure the return on engagement from the perspectives of different stakeholders.

Bringing together patient engagement initiatives in the PARADIGM Open Forum The first PARADIGM Open Forum on Patient Engagement took place in Brussels on 10 April 2018. The Forum was organised jointly with two other patient engagement initiatives: EUPATI (European Patients’ Academy on Therapeutic Innovation) and PFMD (Patient Focused Medicines Development). During the morning of the Forum, delegates heard about the aims and governance of PARADIGM. Different stakeholders referred to the reasons patient engagement was important to their organisation and their motivation and expectations for joining the project. Delegates also had the chance to hear about PFMD and EUPATI and to discuss the links between PARADIGM and these and other existing initiatives and projects, and to participate in four interactive parallel workshops. Alzheimer Europe together with SJD, EURORDIS, EPFIA and the pharmaceutical company Servier co-led one of these workshops, entitled “Getting the most of the survey – which stakeholders and what methodologies”.

PARADIGM will run for 30 months, thanks to funding received from the Innovative Medicines Initiative 2 Joint Undertaking. The consortium is led by the European Patients’ Forum (EPF) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) and comprises a mix of partners including patient organisations, regulatory bodies, universities, non-profit organisations, SMEs and trade associations to pharmaceutical companies. Four European patient organisations and one research foundation are actively involved Understanding the needs, expectations and in this project: preferences of all patient groups y Alzheimer Europe (AE) y European AIDS Treatment Group (EATG) y European Organisation for Rare Diseases (EURORDIS) y European Patients Forum (EPF) y Sant Joan de Déu Research Foundation (SJD)

An important goal of the PARADIGM project is to get a better understanding of the needs, expectations and preferences of the stakeholders involved in the development of medicines. This will help to assess the suitability of existing tools, to identify gaps and

Mathieu Boudes, PARADIGM Project Coordinator, European Patients’ Forum “The mission of PARADIGM is to participate in the co-creation of a sustainable framework to allow meaningful, ethical, systematic patient engagement in medicines R&D. This work is done in close collaboration with other kindred initiatives and is in line with the overall strategy of IMI. The 34 partners of our consortium think alike, are aligned on goals and committed to making patient engagement better in the near future.”

Dementia in Europe

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will ultimately inform the development of the framework that will be co-created by the consortium partners. To achieve this, several instruments will be used including the review of the literature, an online survey, a Delphi study and face-to-face consultations. The online survey has already been completed by over 500 participants. To gain a better understanding of the needs of people living with dementia and young people, face-to-face consultations are also being conducted. The first of these consultations took place during the meeting of Alzheimer Europe’s European Working Group of People with Dementia (EWGPWD) in Brussels on 27 and28 June 2018. The consultation was co-facilitated by Alzheimer Europe (Ana Diaz, Dianne Gove), Sebastien Libert (PhD student, INDUCT) and representatives from industry (Sharareh Hosseinzadeh, Novartis), academia (Suzanne Ii, University of Oxford) and HTA bodies (Neil Bertelsen, HTAi).

About PARADIGM

@imi_paradigm https://imi-paradigm.eu/ This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777450. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.

Madga Chlebus, Executive Director of Science Policy & Regulatory Affairs at EFPIA (European Federation of Pharmaceutical Associations) “Patient engagement becoming a reality and a standard practice will have a genuinely ground-breaking effect on biomedical research, as it will make it more focused on people’s needs. The public private Innovative Medicines Initiative, with its aim to modernise medical research, is a perfect platform for this objective and the perfect springboard for PARADIGM.”

Sharareh Hosseinzadeh, Global Head Clinical Patient Engagement, Novartis “By partnering with our patients, we understand the unmet needs and are more able to integrate patient insights into the design of studies. The IMI PARADIGM consultation has been very useful, as it provided an opportunity to listen to each other and understand diverse expectations. It was particularly helpful to understand the needs of people living with dementia and their friends/families. Big thanks to the EWGPWD and all the participants for their openness to this partnership.”

Suzanne Ii, Postdoctoral researcher, University of Oxford “I had a memorable experience speaking to people with dementia through our IMI PARADIGM consultation. The two days we spent with everyone provided an opportunity to communicate in a way that enabled everyone to share their personal experiences and their specialist knowledge. I hope this consultation serves as one example of how we can better engage with patients and carers to understand how to improve patient engagement overall.”

Dementia in Europe

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In the interview below, Chris Roberts, Vice-Chair of the European Working Group of People with Dementia (EWGPWD) and his wife Jayne Goodrick, discuss their experiences of taking part in this consultation. Chris and Jayne live in North Wales (United Kingdom). Chris was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, in his early 50s. Since the diagnosis, Chris and Jayne have been actively involved in raising awareness of dementia and have inspired many other people to continue to live life to the full with dementia.

background or education to be able to understand the process. Others may need training, information or some kind of preparation.

Jayne: To answer your question about patient engagement and whether this is relevant for people with dementia, I would pose the question: Why wouldn’t it be relevant for people with dementia? If this is relevant to other disease areas, why wouldn’t it be relevant in the Chris, can you tell us a bit about your per- dementia area? The key issue should be supsonal experience of patient engagement? porting the person in any way that may be needed, making sure that the person feels conChris: I have been lucky to be engaged in fident about participating in the discussions. quite a few projects over the last couple of years, especially since I joined the EWG- You recently participated in a consultaPWD. This involvement gives people value, tion for the PARADIGM project as part of a purpose, which sadly after a diagnosis you the EWGPWD. How did you feel about takusually lose. It also stimulates the brain and ing part in this consultation as an expert senses, gives you extra exercise, which are by experience? so important for those affected by dementia. Chris: This at first seemed a bit daunting, but How do you feel about the idea of patient with the information and background that engagement in the process of developing was given and discussed, it ended up being medicines? Do you think this is relevant a very interesting day. I felt that everyone in for people with dementia? the room learnt new things and enjoyed the experience of the day. It was great to have Chris: As you can imagine, it would be very three representatives from PARADIGM in important for people with dementia to find the meeting. They were very patient, down ideally a cure, but also better and improved to earth, very open and they did not mind treatments for all different types of demen- explaining things, which is excellent. I would tia. This has to be done in collaboration with like to thank them on behalf of the group us, with the people affected by dementia, so for being so generous and sharing their time, patient engagement in this area is not just knowledge and experience with us. important, it is fundamental. Patient engagement and involvement can save money and Jayne: As Chris has said, it was absolutely time, give valuable insight and advice that great to have three people from the proyou can only receive from someone living ject and in particular three people with with the condition. I am living with my illness such a wealth of experience and who were daily. I experience and feel things that can’t so passionate about patient engagement. I always be learnt by the professionals in my appreciated the respect given to the group. care or sat around a committee table. We just What I enjoyed the most about the consulneed support, understanding and reasona- tation was the interaction, the cross learning. ble adjustments to be made, we need to be Personally, I loved the back-and-forth interasked what we require to participate. Some action. It was two way: they learnt from us people maybe have already got a relevant and we learnt from them.

What would be your key messages to the PARADIGM project for engaging people with dementia and supporters/carers in the process of developing drugs? Chris: In the consultation, we discussed many of the details and practicalities that should be taken into account before, during and after the patient engagement activity. But a key message which, I think, is particularly important is that involvement should never be a ticking the box thing. If you want to do this engagement process, don’t just tick a box, get suitable candidates, spend a bit more time and resources. Patient engagement should be a positive experience and should be beneficial for all involved: patients, supporters and the people organising the engagement activity. Also, it is important for us to have feedback about how our contribution was used and how we can make our contributions better in the future. We want to do our best but if they don’t tell us, we don’t know. Jayne: From the perspective of the person supporting the person with dementia, I think it is important to be clear what the expectations are. One of the difficulties I often have in the various places we go to is that I am the supporter and I am not sure if I am there as supporter to support Chris or I am there to contribute in my own right. I am never sure whether I have permission to speak, if you like. Also, if the person has never participated in something like this, some briefing or training may be important. Was there anything that you found particularly interesting about PARADIGM? Chris: I found everything very interesting. A lot of what was discussed I had never considered or known about. It was good to take part, learn and share. I particularly liked that PARADIGM is working towards making patient engagement possible for ALL patients. Respect, inclusion and diversity seemed to be quite important for this project. We, as people affected by dementia, do really appreciate the lengths that these organising agencies and companies go to in order to involve us, and we absolutely appreciate what they are trying to do on our behalf.

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The EPAD project reports on significant progress in 2018 Global efforts and cooperation between participating researchers are at a point of coming to fruition with new knowledge generated and innovative compounds about to be tested with the cumulative goal of advancing research in Alzheimer’s disease and preventing dementia. The European Prevention of Alzheimer’s Dementia (EPAD) project officially started on January 2015 for a duration of five years. The EPAD project is an interdisciplinary research initiative across Europe to better understand early aspects of Alzheimer’s disease and to prevent dementia before symptoms occur. It combines knowledge and expertise from 38 European organisations from academia and industry, bringing together a wealth of experience to its activities and making it the largest ever public-private partnership in Alzheimer’s disease research. General Assembly Meeting in Amsterdam (May 2018)

16 Dementia in Europe

EPAD research participants at the heart of the EPAD project EPAD has created the first single, pan-European register of over half a million people across the risk spectrum for dementia. From this register, research participants are invited to join an EPAD cohort of potentially at-risk subjects: the EPAD Longitudinal Cohort Study (LCS). At the end of August 2018, the EPAD project had a total of 907 enrolled research participants in the LCS across 20 European active centres. Besides seeing that each site

is improving recruitment and more than doubling the monthly recruitment rate, the EPAD family of trial delivery centres grew in 2018 with 10 new sites joining. Additional sites are expected to become operational, with the aim of having 30 sites open and recruiting before the beginning of 2019, with more planned to come on board in the following months. In addition, two EPAD research participant panels have been established in Barcelona and Edinburgh which involve research participants in the study, giving them an active voice in the project and helping the collaborators to learn from their experiences. Launch of the proof-of-concept platform EPAD has developed a proof-of-concept (PoC) platform in which new compounds can be tested in a streamlined way, delivering more effective, targeted interventions that can slow or stop dementia. The EPAD PoC platform is now ready to receive interventions for testing in a secondary prevention population. It has been designed to accommodate pharmacological and biological interventions that

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are Phase 2 ready, offering pharmaceutical and biotechnology organisations as well as academic institutions and partnerships an adaptive PoC trial designed to deliver early and accurate results in the most efficient way. The inclusion of the first candidate to take part in the PoC will likely happen in the first quarter of 2019. EPAD researchers present at international conferences The EPAD project has been very well represented at scientific and general conferences in the past several months. The most recent public facing activity of the project came at the Alzheimer’s Association International Conference (AAIC) which took place in Chicago in July this year. EPAD had a large booth in the exhibition area and a satellite symposium was organised to showcase the EPAD PoC trial which attracted companies and investors keen to understand more about EPAD and the benefits of using the platform for drug development. The organisation of this event came at a time where there was strong interest from a handful of companies. The interest in EPAD has noticeably increased in recent months and the launch of the PoC platform in Chicago will further accelerate these efforts.

EPAD Academy members at Amsterdam meeting (May 2018)

EPAD adaptive strategy in this project compared to the usual trial practice. Furthermore, a new updated EPAD website has recently been launched. The website is devoted to informing different audiences about the project’s existence, its progress and achievements, including the scientific community, companies, people with dementia, their families and carers, as well as the general public.

The purpose of the update of the website is not only to improve its readability and EPAD will also have a presence at both the user navigation but also to include two new Alzheimer Europe and Clinical Trials on landing pages for research participants and Alzheimer’s Disease (CTAD) conferences pharmaceutical investigators who may be which will be held this year in October in Bar- interested in using the EPAD platform to test celona. The EPAD co-coordinator Professor their compounds. Craig Ritchie (UEDIN) will deliver the closing session at the CTAD conference, where he will A successful General Assembly meeting in release the first data set (EPAD V500.0) from Amsterdam the EPAD cohort study and the predictors of amyloid status. This year, the EPAD project enjoyed a successful General Assembly from 23 to 25 May in Development of new communication and Amsterdam under the banner “How to assure branding tools sustainability”. The meeting provided a chance to gather over 180 people from across many Alzheimer Europe is a full partner in this different countries who work on the EPAD proconsortium and a co-leader of the “Dissem- ject to discuss progress and future activities. ination” work package, which has developed communication and branding tools to One of the highlights of this year’s General increase the visibility of the project and to Assembly was the “Early Career Researchers” more efficiently reach a wider audience. session. More than 50 young investigators involved in EPAD became fellows of the EPAD High quality content, in the form of a brochure Academy over the last year. These young explaining the PoC platform has been devel- researchers showcased the work they are oped with the aim of generating interest from involved in and discussed ways of collabobiotechnology companies by highlighting the rating between meetings.

The EPAD Academy originated from a realisation that EPAD was an ideal framework for young researchers (“EPAD Fellows”) to grow professionally, expand their views, enhance multidisciplinary perspectives and multiply the impact on their future careers – effectively helping to build the next generation of thought leaders in Alzheimer’s research.

About EPAD EPAD is an Innovative Medicines Initiative (IMI) project aiming to improve the understanding of the early stages of Alzheimer’s disease and deliver new preventative treatments. info@ep-ad.org @IMI_EPAD www.ep-ad.org

The EPAD project has received support from the Innovative Medicines Initiative (IMI) Joint Undertaking under grant agreement n° 115736, resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies’ in kind contribution.

Dementia in Europe

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Providing European leadership in research and innovation

procedures for participation. We also introduce some important new elements that have a common aim to increase the impact of EU research and innovation funding.

As Horizon Europe, the new European research programme is being developed, Alzheimer Europe talks to Carlos Moedas, EU Commissioner for Research, Science and Innovation about current and future European priorities for dementia research.

One of them is the establishment of a European Innovation Council, a flagship initiative in Europe to identify high-risk, fast moving innovations that can create entirely new markets. Another is launching EU-wide research and innovation missions with bold, ambitious goals and strong European added value.

The new research programme is one of the few EU budgets to go up in the Commission’s seven-year proposal. What will the priorities be for the next seven years? The top priority is to help Europe become the global innovation powerhouse that it has the potential to be. We are a global leader in top-class research, but we can do better in translating these results into innovation that boosts economic growth and creates jobs. There is no doubt that research and innovation are crucial for Europe’s future prosperity.

The proposal for Horizon Europe, our research programme for 2021–2027, is built on that principle. Indeed, the proposed budget, nearly EUR 100 billion, clearly shows our commitment to European leadership in research and innovation. This increase amounts to as much as 50% when taking into account the EU of 27 Member States.

Looking back at the current Horizon2020 research programme, what have been the key achievements in the dementia field?

Since the beginning of Horizon 2020 in 2014, the Commission has invested some €462 The new programme builds on the achieve- million in 258 dementia research projects ments of Horizon 2020, our current covering the entire spectrum of the disease. programme, which is a European success The main drivers of the research are personstory. So we keep the same basic structure alised medicine, digitalisation of healthcare and little will change in terms of rules and and implementation research.

Carlos Moedas, EU Commissioner for Research, Science and Innovation

18 Dementia in Europe

We are delivering on this top priority for the EU, and equipping ourselves to thrive in the society of tomorrow. Horizon Europe will make a real difference in the lives of citizens and society as a whole.

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“

Horizon Europe will make a real difference in the lives of citizens and society as a whole”

projects such as BRIDGET, which addresses late diagnosis in Alzheimer’s. Data is a key enabler for the digital transformation of healthcare services, and Horizon 2020 projects such as EUROPOND are developing computational models that can identify characteristic patterns of progression for some brain diseases, including Alzheimer’s. The EU is also part of the Global Alliance for Chronic Diseases (GACD), a collaboration between 14 funding agencies for ensuring that known, effective health interventions are implemented in real settings, globally. Mental disorders were the focus of a topic in 2017, from which two projects on neurodegenerative diseases emerged: PRODEMOS (for promoting self-management of risk factors in dementia patients) and RECAGE (develops specialised care units to better manage symptoms in dementia patients).

will consist of a whole portfolio of different cross-cutting actions.

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The Commission has invested some €462 million in 258 dementia research projects covering the entire spectrum of the disease”

Examples of potential missions could be: “Forgetting Alzheimer’s”, “Plastic-free oceans”, or “Women on Mars”. These kinds of goals are not only easy to comprehend, but they capture the imagination of regular citizens. They also make it easier to conclude if the mission has been a success or not. The missions are intended to help solve some of society’s most pressing problems, and there will be a public call for feedback in order to determine which issues we need to target. Relevant stakeholders will be consulted when a misWe also launched an initiative on “Coordinat- sion is designed in their area of work. ing European brain research and developing global initiatives” to promote coordination In terms of next steps, the first missions will among European researchers. be introduced in the first work programme of Horizon Europe, which will launch in 2020. Under the Innovative Medicines Initiative 2 There is a new idea for “Research Missions” After two years we will take stock and decide (IMI2), the EU’s public-private partnership and dementia has been mentioned as a if the number and scale of the missions need with the pharmaceutical industry, the pro- topic for one of these missions. How would to be adapted. ject PHAGO shed some light on the role of this work in practice? neuro-inflammation in Alzheimer’s disease to pave the way for future development of It is too early to go into detail about the mispersonalised therapies. Another IMI project, sions because they have yet to be designed. EPAD, made tangible progress in identifying But what I can say is that they will be co-dethe early stages of the disease. EPAD together signed by stakeholders and citizens. This with IMI’s EMIF-AD and AETIONOMY forms could be done as part of mission boards that the IMI Alzheimer’s disease platform, which will be set up after a public call for expreshas a combined budget of €138 million. sions of interest. Personalised medicine has also been addressed through the EU Joint Programme for Neurodegenerative Diseases Research, which has invested €150 million in nine transnational calls for proposals and funded

“

The idea behind the missions is to set out an easy-to-understand (and easy-to-measure) goal that is to be achieved within a specified timeframe. The missions, crucially, must be able to generate bottom-up solutions, and

Potential missions could be: […] “Forgetting Alzheimer’s”. These kinds of goals are not only easy to comprehend, but they capture the imagination of regular citizens”

Profile Carlos Moedas has been the European Commissioner for Research, Science & Innovation since 2014 and served as Secretary of State to the Prime Minister of Portugal from 2011 to 2014. @moedas

Dementia in Europe

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The EU Joint Action on dementia: Collaborating among European countries to improve the lives of people with dementia and their carers Act on Dementia is an EU Joint Action (Grant Agreement No. 678481) which began in March 2016, and has received funding from the European Union’s Health Programme (2014–2020). Its aim is to promote collaborative actions among Member States to improve the lives of people with dementia and their carers. The provision and quality of services for people living with dementia and their carers have improved but they are not consistent across European Members States. This was the rationale for the launch of Act on Dementia, a 3 year EU Joint Action which began in March 2016.

Diagnosis and post-diagnostic support

admissions for people with dementia. And importantly to support people to make decisions about their future whilst they still have capacity to do so. This work has been led by Professor Pierre Krolak-Salmon who is a neurologist and geriatrician at the University Hospital of Lyon (France) and the director of the Clinical Research Memory Centre of Lyon and the Clinical Research Centre “Elderly, Brain and Frailty”.

This work aims to provide evidence based Work is now under way to implement pilot approaches which have been tested in prac- projects which include: tice, to support improvements in diagnosis and post diagnostic support across EU mem- y A de-stigmatisation programme for GPs ber states. is taking place in Bulgaria, France and Poland asking GPs to consider dementia The aim of the Act on Dementia Joint Action The rate of dementia diagnosis varies greatly as a real disease; the project is running is to promote collaborative actions among between Members States and in many places training sessions in Limoges, Lyons, LubMember States to improve the lives of peo- post-diagnostic support is non-existent, or lin and Sofia (with 85 particularly newly ple with dementia and their carers. It will at least underdeveloped. Where a diagnosis qualified GPs). Questionnaires will be sent provide practical guidance for policymakers occurs later, or is poorly communicated, and before and after the training about stigma, developing and implementing their national unsupported by subsequent interventions, stereotypes and knowledge about diagnodementia plans, policies and strategies. It the risk of institutionalisation and other poor sis pathways. aims to provide cost-effective and practical outcomes is significant for the person with y Pilot testing of GP/nurse cooperation proexamples of the core components of good dementia and their carer/family. This is not gramme is taking place in Bulgaria, France dementia diagnosis, care and support. optimal for the person with dementia, their and Italy. So far 5 nurses in France and 20 carers or the health and social care system in Bulgaria have been instructed with a Partners working together on this Joint Action in which they live. (JA), which is being coordinated by the Scottish Government, are from Bulgaria, France, Greece, Improving diagnosis rates and post-diagnosItaly, the Netherlands, Norway, Poland, Roma- tic supports for people with dementia and Joint actions are a financial mechanism nia, Spain and the United Kingdom. their carers allows people with dementia, in the Health Programme to cover specific their families and those involved in their care health-policy needs. They support EU The four key areas of focus for Act on Demen- to benefit from timely access to treatments, cooperation with an important number tia have been: diagnosis and post-diagnostic interventions, information and education, as of partners which are either competent health authorities in the Member States support, crisis and care coordination, qual- well as services which can improve the quality or other organisations designated by ity of residential care, and dementia friendly of life, facilitate hope and the opportunity to these competent authorities. Joint actions communities. Evidence reviews have been live well with dementia for as long as possible. generate momentum for wider impact. The completed during the first phase of the JA Better care planning, facilitated by post-digains for the Member States involved can (2016–2018) and can be found under the agnostic support can also contribute to be substantial in terms of knowledge and experience exchanged. resources section of the Joint Action’s web- reducing health and social care expenditure site at www.actondementia.eu. on preventable hospital and residential care 20

Dementia in Europe

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further 29 being targeted in Modena, Italy. One of the challenges has been to secure GP agreement. yy Pilot testing of tele-medicine in care homes is being conducted in Bulgaria, France and Greece. Real challenges have arisen due to data protection legislation, but 7 nursing homes are participating using 4 common detection scales.

Institute of Health (INIH) and is the Head of the Promotion and evaluation prevention policy of chronic diseases Unit at the National Centre for Disease Prevention and Promotion Disease. Jacqueline Hoogendam who co-leads the work package, is a senior policy advisor at the Ministry of Health, Welfare and Sport of the Netherlands and works on International Dementia issues.

Crisis and Care Coordination

Next steps for this work involve pilot sites which are engaged in training GPs and case People with dementia need different sorts of managers (face to face and by online learning care and their need for care can increase as the modules) to identify and deal with the signs disease progresses. In most health and care of stress and distress in patients with demensystems dementia care will be provided by a tia. Care co-ordination approaches are being range of different organisations, each working tested in some test site areas to support peounder different eligibility and funding rules ple before, during and after a diagnosis of and often without clear co-ordination. As an dementia, for example through group sesoutcome, the experience can feel fragmented. sions and one-to-one support. People who are confused due to their dementia, get confused even more by the different care providers, and their different systems and points of contact and their carers often have to take on responsibility for care co-ordination themselves.

Residential Care

As dementia progresses, many people in the later stages will require round the clock care, and depending on family and environmental circumstances this may lead to admission to a residential care establishment. A large proIt is also important that physical environ- portion of nursing and residential care home ments are adapted to help enable people residents have dementia (in some countries to live as well and safely at home as possi- up to 80%). ble for as long as they can. In situations of crisis, where the person with dementia, or It is important to ensure high quality protheir primary carer has an acute episode of fessional care, including palliative care, is illness or trauma, the person with dementia delivered with dignity and compassion may be admitted to hospital or a residential within residential and nursing care estabcare institution. Admission to institutional lishments. A specific issue for people with care is often unnecessary and is a result of dementia in residential care is the overuse of either limited access to alternative and more antipsychotic medication to manage stress appropriate care, or lack of care co-ordination and distress behaviours. It is important that between health and care providers.

people with dementia in these settings are prescribed such medication only as a last resort, that there is a range of alternative psychosocial interventions including therapeutic activity and interventions available and that when medication is used, its use is reviewed regularly. This work is led by Ă&#x2DC;yvind Kirkevold, Nurse and Assistant Research Director at the Norwegian National Advisory Unit on Ageing and Health. The next phase of work includes: yy Pilot testing 6 projects (one on end-of-life care and five on behavioural and psychological symptoms in dementia [BPSD]) yy Staff training yy Improving treatment of stress and distress and improving care in the last days of life Dementia-friendly Communities Dementia-friendly communities can help to support people with dementia to live more independent and fulfilling lives in their own communities. Evidence has shown that appropriate support in the community can reduce the number of people with dementia being admitted to hospital and can delay their entry into care homes. As more Member States look at the costs of caring for people with dementia, there is an opportunity to develop alternative community support, to empower people with dementia to actively participate in society and remain independent for as long as possible â&#x20AC;&#x201C; reducing stigma, isolation and fear by increasing community awareness and understanding.

Family care-givers often report significantly increased anxiety, apathy, resistance to care, and distress in these types of crisis situations. Care navigation models, crisis support models and better practice can significantly reduce strain on care-delivery systems by incorporating non-pharmacological interventions, assisting families with communication, and reducing family distress during symptom crises. This work is jointly led by Italy and the Netherlands. Professor Nicola Vanacore is a senior neuro-epidemiologist at the Italian National

Act on Dementia website (www.actondementia.eu)

Dementia in Europeâ&#x20AC;&#x192; 21

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The UK Alzheimer’s Society conducted a survey via YouGov that found that less than half of the respondents to the survey thought their area was geared up to help them live well with dementia (42%) and less than half considered themselves a part of the community (47%). Stigma was particularly highlighted by people with dementia and carers. More than half of those surveyed thought that the inclusion of people with dementia in the community was fairly bad or very bad (59%). Work has been undertaken to collate and provide evidence-based information and recommendations on promoting, nurturing and sustaining dementia-friendly communities. For example, defining what “good” looks like for a system-wide approach, understanding how good practice is sustained and promoting the various benefits, including economic benefits, for communities of being dementia friendly.’ David Nuttall, the Deputy Director of Dementia and Disabilities at the UK Department of Health and Social Care, leads the dementia-friendly communities work. Next steps include: yy Pilot testing in a variety of sites – a mix of large/small, urban/rural, different cultures, economies and health and social care systems and of fledgling and mature dementia-friendly communities; yy A core element of the testing is that people with dementia and families and caregivers will receive a survey before during and after testing; measuring inclusivity, isolation, stigma etc. and how easy it is to live their daily lives with dementia, including access to travel, shopping, banking, leisure and cultural activity. yy Work is also going on to consider harder indicators to measure the success of these pilots – e.g. hospital and home admissions and diagnosis. yy The initial activities in Bulgaria and Greece focus on “caregiver schools” – holding programmes in civic setting (a school) over 4 weekly meetings by healthcare

22 Dementia in Europe

The Joint Action Programme Board meeting in Utrecht

professionals plus caregivers; sharing lived experience and opportunities for getting advice/having time-out. These are due to finish soon. Surveys are being conducted before and after. Anti-stigma leaflets are being prepared for schools, police, banks etc. raise awareness and increase access. Stigma questionnaires will be issued. Intergenerational activity will include children playing with elderly in a community setting; improving accessibility of local services through workshops with pharmacies, banks, public transport – taxis, buses, trains.

“

Alzheimer Europe is a collaborating stakeholder of the Joint Action. This helps to ensure that the voices of people with dementia and their carers are central to the work”

Alzheimer Europe is a collaborating stakeholder of the Joint Action. This helps to ensure that the voices of people with dementia and their carers are central to the work. The organisation is represented by its Executive Director, There are also three horizontal work pack- Jean Georges who sits on the Joint Action Proages which cut across the activities of the gramme Board, and the European Working rest of the JA: Group of People with Dementia has offered advice on different aspects of the work so far. yy Evaluation led by Maria-Dolors Estrada from AQuAS, Agency for Health Quality The work of the Joint Action will be showcased and Assessment of Catalonia; widely at the Alzheimer Europe Conference in yy Dissemination led by Gillian Barclay, Scot- Barcelona in October 2018. We look forward tish Government; to seeing you there and will be happy to disyy and Coordination, led by Geoff Huggins, cuss our work further then. We hope to hold Director of NES Digital Service and Direc- our final conference towards the end of 2019 tor of Health and Social Care Integration, when we will bring together and share the Scottish Government. lessons learned.

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Alzheimer Europe caught up with Gillian Barclay from the Scottish Government to discuss her experiences, challenges and hopes from her involvement in the coordination and dissemination work packages. What have been the biggest challenges so far in coordinating this joint action? I would have to say that the vote for Brexit in the UK just three months after the start of the JA was unexpected.. It has made it a very important aspect of our work to reassure colleagues in the EU and our partners in the JA of our commitment to see this work through. Whatever our position in relation to Europe after 2019, there are still around 90,000 people living with dementia in Scotland, and an estimated 50 million worldwide. The aim of the JA is to promote actions to improve their lives and those of their carers and this work remains a clear priority for the Scottish Government. It is also true that there are significant differences across our partner countries in how we

What do you hope will be the most significant impact of the JA?

If we can provide examples of excellent practice which can be adapted to suit different circumstances to decision makers in Member States (and wider) and provide tools to help other countries to implement these, then we will make a difference. In the timesapproach caring for and supporting people cale available (3–4 years), it is a challenge to with dementia. In some countries for exam- demonstrate tangible successes, but that is ple, the term “dementia” is not recognised. what we are all working towards. It has been important to try to understand these differences. What have you enjoyed most in the project

“

The contribution of the European Working Group of People with Dementia means that we maintain our focus on the people for whom this project will make the greatest difference and working with them has been a privilege” Gillian Barclay

For me, it has been building relationships with the work package leaders and experts from other countries. It is a relatively rare opportunity for us as civil servants to work so closely with other nationalities, and one which I have enjoyed immensely. The role played by Alzheimer Europe in the project, and the contribution of the European Working Group of People with Dementia means that we maintain our focus on the people for whom this project will make the greatest difference and working with them has been a privilege.

Joint Action Work Package Leaders

Gillian Barclay

Maria-Dolors Estrada

Jacqueline Hoogendam

Geoff Huggins

Øyvind Kirkevold

Pierre Krolak-Salmon

David Nuttall

Nicola Vanacore

Dementia in Europe

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Sweden announces decision to launch national dementia strategy On 24 May 2018 in Stockholm, Lena Hallengren, Swedish Minister for Children, the Elderly and Gender Equality, announced the Swedish Government’s decision to launch a National Dementia Strategy for Sweden. Our colleague Karin Westerlund from Alzheimer Sverige had the opportunity to catch up with the Minister about some of her thoughts on dementia during the summer campaign before the national elections on 9 September. The National Dementia Strategy was announced with the overall ambition of equality in care for people with dementia. A first outline of the work-plan is to be presented to the Swedish Government on 10 October 2018 by the Swedish National Board of Health and Welfare. Following feedback from the Government, the Board will then present a revised work-plan which will be produced for the Swedish Government by 1 June 2022 and which will include long-term strategic issues, how to follow-up on them and key performance indicators for dementia in Sweden. In May 2018 you announced a dementia strategy for Sweden. What do you hope will be achieved with the new strategy and how will it be developed?

standard, including assisted-care housing facilities in place in all Swedish communities, of which Sweden has 290, with qualified/ skilled staff. All staff should be trained about dementia symptoms and the progression of neurodegenerative diseases. Olivia Wigzell, the Director-General of the Swedish National Board of Health and Welfare has overseen the revision of the current Swedish National Guidelines for Dementia. This considerable task has been ongoing since 2010, with the Board working with the World Health Organisation as part of this work.

The proposed Swedish National Dementia Strategy consists of a number key areas: yy Cooperation between health and social care services. yy Staff-quality and competence building. yy Evaluation and follow ups. yy Caregivers. yy Civil society. yy Digitalisation and technical solutions as part of the care process for people with dementia. In October this year, the Swedish Government expects to receive a strong first plan for a Swedish Dementia Strategy, incorporating these key areas, from the Swedish National Board of Health and Welfare under the direction of Olivia Wigzell.

“

Equality of care is the cornerstone of the forthcoming Swedish Dementia Strategy”

Then, work on the dementia strategy will commence, including working with the Swedish communities which have responsibility for the cost of nursing homes. In 2022 the plan will then be finalized and we wish to ensure that the plan is for the long-term with “futureproof” content.

It is estimated that 150,000 people are living with dementia in Sweden. The Swedish Government expects this figure to increase by over 50% by 2050. The number of individuals aged over 80 years is also expected to increase substantially, accounting for 15% of the total population, or a million people, by 2030. It is of importance that all citizens get equal care, therefore equality of care is the cornerstone of the forthcoming Swedish Dementia Strategy. Swedish citizens shall be able to expect that ageing is something secure. To meet these needs, the Swedish Government believes in organising health and welfare to a high 24 Dementia in Europe

Lena Hallengren, Swedish Minister for Children, the Elderly and Gender Equality

POLICY WATCH

What do you see as the biggest priority and the biggest challenge in the fight against dementia in Sweden?

and listen very carefully about IT and technology to meet the needs for future care, especially for the elderly. However, that should be done to increase individual integThe Government believes that knowledge rity of patients and staff; any integration about existing legislation must be increased of technological tools related to the direct in order for people in need of coordinated physical care of patients must be done care to be able to get the right care through- slowly, stepwise and thoughtfully. out the care pathway. Therefore, although technology is at the In Sweden there is a shortfall of healthcare forefront in Swedish business life, it is not a staff of approximately 130,000 people to substitute for humanity or caring. The Swedadequately meet the future demographic chal- ish Dementia Strategy does not contain any lenges and to care for the ageing population. targeted plan or budget for new IT infrastructure or the development of new IT tools. The Swedish Dementia Strategy does not have a designated budget or “targeted” funds speAlthough technology is at cifically to realise its content. However, the municipalities and county councils will receive the forefront in Swedish SEK 8 million in 2018 to develop materials and train staff in coordinated person-centred plan- business life, it is not a substitute for humanity or caring” ning throughout the care pathway. At present, there is a gap between social care services and psychiatric care of dementia and we wish to ensure that elderly people and people with multiple illnesses with high coordination needs (for example a person with Down’s syndrome and severe stage dementia) receive the right help regardless of whether they are in county councils or municipalities. The Swedish Dementia Strategy will also safeguard integrity for persons with dementia. That notion of integrity includes the staff working with people with dementia, hence forthcoming financial support will be allocated to develop dementia quality registers. In addition, the Swedish Centre for Dementia receives SEK 2 million to provide information materials and tools for those who provide care and support for people with dementia. The purpose of the materials is to improve communication and coordination. The work will be done in partnership with the Swedish municipalities and the National Board of Health and Welfare. The information materials and tools will be available on the Swedish Dementia Center website and will be free of charge for health and medical personnel. Under key area number seven of the dementia strategy work plan “technology as a part of health and welfare”, it is expected that technology should be utilised as a tool for staff and patients. There is a need to learn

In Sweden, dementia is often mentioned as a disease of the elderly, but the Swedish Government knows of course that ageing is a risk factor for neurodegenerative diseases, not a cause.

“

The current Swedish Dementia Guidelines underline that dementia symptoms evolve most often at an older age. From that concept, the Swedish government can maintain a focused dialogue about dementia with the communities about nursing home resources, with emphasis on security and integrity, as well as in accordance with tax funding and When deciding to proceed with the strategy, distribution of means in the Swedish health you consulted with neighbouring Nordic system. This means that people with demencountries who already have successful tia may fall under the category of “elderly” dementia strategies in place. What lessons in future. did you learn? How important is the Government’s relaThe current National Guidelines for Demen- tionship with the Swedish Alzheimer’s tia developed by the Swedish Board of Health Associations? and Welfare are the underlying foundations of the future Swedish Dementia Strategy. As Alzheimer Sverige and Demensförbundet have Olivia Wigzell (Director-General of the Swed- a close relationship with the Swedish Board of ish National Board of Health and Welfare) is Health and Welfare and also with the SwedSweden’s representative in the Executive ish Centre for Dementia. They have been part Board of the World Health Organisation, the of the development of the current Swedish key areas of the future strategy are fully in National Guidelines for Dementia, therefore line with the work of the World Health Organ- these organisations will have also have voice isation on dementia. in the future Swedish Dementia Strategy. I am also very open to continue talking to my Nordic colleagues in the future and collaborating with them on work for people with dementia. Do you think there is a need for closer co-operation on dementia at European level and between Member States? Yes. As already mentioned, the Swedish Government supports the work on dementia and many other health and welfare issues concerning the ageing population which is coordinated by the World Health Organisation.

Profile Lena Hallengren serves as Minister for Children, the Elderly and Gender Equality since 8 March 2018. She has been a member of the Riksdag since 2006 and previously served as Deputy Minister of Education from 2002 to 2006. @lenahallengren

Dementia in Europe

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Portugal makes significant advances in dementia policies 2018 has been a particularly busy and successful year for our colleagues from Alzheimer Portugal. Maria do Rosário Zincke dos Reis highlights some of the successes of the organisation in making dementia a national priority. “Resilient” is perhaps the best word to define Alzheimer associations and people involved in promoting the quality of life and legal rights of people living with dementia. Since 2006, when Alzheimer Portugal, together with all Alzheimer Europe member associations at the time, signed the Paris Declaration, we have been working hard to make dementia a national public health priority. As some of you may recall, the 17th Alzheimer Europe Conference “The Sound of Silence” took place in May 2007 in Estoril, Portugal and was attended by a number of policy makers, including a representative of the Presidency of the Portuguese Republic who endorsed the Paris Declaration. In advance of a conference held by the Calouste Gulbenkian Foundation (on the theme of “Alzheimer Disease – Which Politics?”) in October 2009, Alzheimer Portugal prepared a document called “Alzheimer’s National Intervention Plan”. The plan inspired some political initiatives towards the recognition of dementia as national priority around the following priority areas: 1. Better quality of life for people living with dementia and their carers, including issues related to pharmacological and non-pharmacological interventions, social support, facilities and services, through the implementation of health and social policies specific for people with dementia. 2. Research on the causes, prevention and diagnosis of Alzheimer’s disease, as well as the collection of epidemiological data. 3. Creation of a legal framework defining the legal rights of people with incapacity, including a legal framework for care, intervention and research.

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In 2018, when Alzheimer Portugal is celebrating its th 30 anniversary, we are pleased to be able to share some of our recent achievements”

and how it influences national policies, it is useful to highlight that the Act for Government includes several references to important Alzheimer Europe resources, including:

1. “National Dementia Strategies – Policy in Now, in 2018, when Alzheimer Portugal is celPractice” (Alzheimer Europe, 2009). ebrating its 30th anniversary, we are pleased 2. “2013: The Prevalence of Demento be able to share some of our recent tia in Europe – Country Comparisons” achievements. (Alzheimer Europe, 2013). 3. “2017 Alzheimer Europe Report: European Health Strategy for Dementia Dementia Monitor 2017 – Comparing and Benchmarking National Dementia Policies In June 2018, the Health Ministry launched the and Strategies” (Alzheimer Europe, 2017). “Health Strategy for Dementia”, which is the result of the recommendations included in “Dementia Friends” Campaign the “Bases for the Definition of Public Policies in the Field of Dementia” to which Alzheimer Under the High Patronage of His Excellency, Portugal contributed. the President of the Republic, Alzheimer Portugal launched its Dementia Friends CamThe Strategy sets out the principles of care paign on 30 July coinciding with International for people with dementia, criteria on preven- Friendship Day. tion, early detection, availability of clinical and comprehensive diagnosis, therapeutic In 21 different places in the country, rangintervention at primary care level, hospital ing from beaches to city squares, from the and specialised care, a care pathway based north to the south and islands of Portugal, on the ethical principles of proximity, avail- 180 Alzheimer Portugal volunteers invited ability, equity and continuity. The Strategy people to become dementia friends by folis a very promising document, however, lowing four steps: it is focused only on the health care system and does not include social and legal 1. Visit www.amigosnademencia.org. perspectives. 2. Register on the website. 3. Watch a video to learn more about Alzheimer Portugal will now participate in the dementia. National Health Plan for Dementia Coordi- 4. Commit to one concrete action (such as nation Group led by António Leuschner. This becoming a volunteer with Alzheimer PorCoordination Group will be responsible for tugal, not using words like “demented” the development of accompanying Regional or making friends, colleagues or family Dementia Plans that, within a year, will have aware about dementia). to launch measures on dementia adapted to the specificities of each Region. The meas- This is a nationwide awareness campaign ures must be prepared in accordance with aimed at reducing stigma and changing the the National Health Plan and the National way people think, talk and act about demenMental Health Plan. tia. It shows that it is possible to live well with dementia and demonstrates that there As a clear evidence of the importance of the is much more to a person with dementia than work that Alzheimer Europe has been doing their condition. Dementia in Europe

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The campaign has the support of the UK Alzheimer’s Society and is sponsored by different organisations, including t many municipalities. It will last till the end of 2020 and it is expected to reach 60,000 dementia friends. At national level the campaign is a significant contribution to raising awareness and is in line with the aforementioned Health Strategy for Dementia, which recognises the need to develop awareness campaigns in order to combat against a lack of knowledge among the public.

Portugal with the support of the Directorate General of Health. This will allow for a comparison of the awareness about dementia before and at the end of the campaign. Legal Rights of People Living with Dementia

As can be seen from the Dementia in Europe Monitor (Alzheimer Europe, 2017), Portugal has signed and ratified the main International or European Human Rights Treaties, including the UN Convention on the Rights of Persons with Disabilities (UNCRPD). However, this is in itself not enough to truly promote the legal rights of people with disability, including peoThe launch of the Dementia Friends cam- ple with dementia. paign went well with good media coverage from TV, radio and newspapers, as well as the Alzheimer Portugal was therefore delighted involvement from Alzheimer Portugal staff to welcome new legislation on the promoand volunteers, with lots of photos and pos- tion of autonomy of people with incapacity, itive reactions to the initiative being shared approved in July 2018 by the Portuguese Paron social media. The next Memory Walk that liament and published on 14 August. takes place in September in 67 different locations will represent a huge opportunity to This legislation is an initiative of the Governinvite and gather more Dementia Friends. ment with the special involvement of the Minister of Justice and will come into effect Immediately before the launch of the cam- on in February 2019. The Act, inspired by the paign, a survey was conducted about the “Betreuungsgesetz” of German Law, will end the perceptions people have on dementia in approach of “interdiction” and “incapacitation” Dementia friends campaign in Portugal

28 Dementia in Europe

“

We believe that the Dementia Friends campaign will play a significant role in the way people think, talk and act in relation to dementia”

as previously applied by the Civil Code of 1966. Instead, a legal framework promoting greater flexibility and autonomy will apply. It complies with the UNCRPD, particularly in relation to Article 12(4) which states: “States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The

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Conclusion

We believe that the Dementia Friends campaign will play a significant role in the way In Portugal, 2018 has been an incredibly people, including political decision makers, important time for the launch of key political health, social care and legal professionals, This is evident in the new legislation which and legal measures towards a more demen- think, talk and act in relation to dementia. makes provisions for persons to choose, in the tia friendly society in line with the global and This will be significant in the implementation judicial process or in advance, who they want European dementia movements. of the Health Strategy for Dementia and the to help or represent them in the different areas new legal rights legislation. of their life, including in relation to personal We hope that the coming years will see issues, health care, finances and property etc. these excellent initiatives put into practice with a strong focus on training and awareProfile In addition, the law also states that the deci- ness, with further developments taking Maria do Rosário Zincke dos Reis has been sion of the court shall take into account any place such as the establishment of profespracticing law in Portugal since 1987, with living will and/or health care proxy, and that sional guardians. Indeed, this latter issue is a focus on family law and the legal rights of people with incapacity. She served the individual’s preferences expressed in crucial as there are large numbers of peoas Chairperson of Alzheimer Portugal advance must be respected. ple with incapacity with no guardian, living between 2001 and 2012 and currently she is alone in poor conditions (e.g. lacking food, a Board member and a volunteer especially Alzheimer Portugal is very happy with this poor hygiene etc.) because there is no one focused on training and lobbying. Rosário important step forward for the effective to be appointed to protect them and to act has been a member of the Alzheimer Europe Board since 2008 and the Honorary promotion of the legal rights of people with on their behalf. The new legislation does not Treasurer since 2010. dementia. This area will be one of the key resolve this issue. themes to be explored at our conference (“A rosariozincke@gmail.com holistic perspective of dementia”) which will Alzheimer Portugal is very proud of being rectake place in Lisbon on 22 and 23 November ognised by the Government as a real partner 2018 to celebrate our 30th anniversary. The par- in the development and implementation of ticipation of the Minister of Justice, Francisca policies and legislation that are meaningful van Dunem is already confirmed. for people with dementia and carers. safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.”

Dementia in Europe

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French decision to stop the reimbursement of Alzheimer’s medicines comes under fire As of 1 August, medicines for the treatment of Alzheimer’s disease will no longer be reimbursed in France. Alzheimer Europe discusses the consequences of this decision with Pierre Krolak-Salmon, President of the French Federation of Memory Centres. According to the French “Haute Autorité de Santé” (HAS), the current medicines for the treatment of Alzheimer’s disease have an “insufficient” efficacy for them to be reimbursed. How do you assess the efficacy of these drugs? These drugs have been scientifically assessed thanks to large scale international randomised controlled trials. All published studies and meta analyses were in favour of the effectiveness of the these drugs for a symptomatic effect on cognition in patients with Alzheimer’s disease, Lewy Body disease and cognitive disorders of Parkinson disease. These drugs were then given a marketing authorisation in the light of a satisfactory answer to effectiveness criteria established by the regulatory agencies such as the Food and Drug Administration (FAD) and the European Medicines Agency (EMA) The clinical effect of these drugs is small when considering them alone. However, they build up a synergy with non-drug therapies. Over the last twenty years, many help and support programs were developed in Europe for patients and caregivers which promoted and strengthened the synergy of medical and social approaches. Only an interdisciplinary approach including the general practitioner, the specialist physician of neurocognitive disorders, the paramedical professionals such as the speech therapist, psychologist, occupational therapist, psychometrician and/or

National Institute for Health and Care Excellence in the United Kingdom (June of 2018). Unfortunately, we have to say that this level of evidence is currently not reached by the psychosocial interventions, but we miss scientific study design adapted to non-pharmacological interventions. The French Federation of Memory Centres has campaigned against the decision of the French Health Minister. How did other organisations react to this decision and what are the next steps in your campaign?

The main French scientific and medical societies and professional associations* joined us, as well as France Alzheimer and France nurse can be efficient. In addition, social ser- Parkinson. Numerous articles were published vices coordinate the home care plan tailored and interviews were given at a national level. to the dependency needs of the person and All these organisations shared their deep disfamily associations support the patients and agreement regarding this unfair decision. A their relatives. This comprehensive approach court action has also been launched with an reduces the impact of the loss of autonomy appeal made to the “Conseil d’Etat” which and enhances the “well-being” of the patient has the support of all the organisations. and his/her relatives, which is the goal of this approach. In your experience as a doctor treating people with Alzheimer’s disease, what has been The use of these drugs is part of this care the reaction of people affected and their pathway. All the therapeutic measures and family members to this decision? support contribute to the slowing down of the patient’s cognitive, functional and behav- They do not understand. A particular concern ioural impairments. is the point regarding the “danger” that has been reported by the High Authority of Health, Apart from the limited efficacy, experts and the fact that their medical doctor (whom highlighted the risk profile of these med- they trust) did not mention it apart from icines as another reason to stop their mentioning possible and usual side effects. reimbursement. How dangerous are these On the whole though, they keep on trusting drugs? us and ask for advice on whether to keep on taking these drug or not. Their tolerance profile has been known for almost 20 years and is consistent with what But, some people will face some real financial is expected. No negative or dangerous pharma- issues, as these expenses for medicines will covigilance signal was reported by the health now be added to all the other costs linked to authorities of western countries. Furthermore, the disease. no national or European health safety agency whose aim is to assess the benefits/risks of How is the reimbursement situation of drugs questioned the safety of these products. these medicines in other EU countries? The positive benefit/risks ratio has been recently confirmed by some meta analyses (Tan et al., 2018, Isik et al., 2018), a Cochrane review (Birk and al., June of 2018) and the

To my knowledge, only 2 or 3 countries do not reimburse at least one of the 4 listed drugs. These countries did not develop any national plan regarding AD and dementia.

* Fédération des Centres Mémoire, Société Française de Neurologie, Fédération Française de Neurologie, Association des Neurologues Libéraux de Langue Française, Société Francophone de psychogériatrie et de psychiatrie de la personne âgée, Société de Neuropsychologie de Langue Française, Collège National Professionnel de Gériatrie, Société Française de Gériatrie et de Gérontologie.

30 Dementia in Europe

POLICY WATCH

You coordinate the work of the 2nd EU Joint Action on Dementia on timely diagnosis. Do you fear that decisions such as these could further delay the diagnosis of Alzheimer’s disease in France?

Fortunately, we have a very good dialogue with the French GP community, especially with the “Collège de Médecine Générale” regarding the need for a better detection of neurocognitive disorders in primary care. A French paper (and a European paper in prepaThis is definitively not a good signal for ration) has just been co-signed to propose detection of neurocognitive disorders in a graduated and tailored diagnosis stratprimary care and for co-working with spe- egy involving the GP from the beginning to cialists to provide an etiological diagnosis post-diagnostic support, including access as well as tailored post-diagnostic support. to research and especially clinical trials. This Therefore, all the medical societies and strategy fits within the frame of the French organisations, as well as professionals and national plan of neurodegenerative diseases informal caregiver associations like France and the European Joint Action “Act on demenAlzheimer keep on fighting. tia” financed by the European Commission.

Profile Professor Pierre Krolak-Salmon is a neurologist and geriatrician and Head of the Memory Centre of Lyon (France) and the Clinical Research Center “Elderly, Brain and Frailty”. He teaches at the University Claude Bernard Lyon 1 and is the current President of the French Federation of Memory Centres. He coordinates the work package on timely diagnosis and postdiagnostic support of the 2nd European Joint Action on Dementia. pierre.krolak-salmon@chu-lyon.fr @krolaksalmon

Alzheimer Europe and its member organisations condemned the decision of the French government to exclude current medicines licensed for the treatment of Alzheimer’s disease from the reimbursement system.

main reasons for people coming forward for an early diagnosis of their condition who would therefore no longer benefit from other significant advantages of an early diagnosis. y European citizens should have equal rights to protection and access to health The organisation also expressed grave y No significant safety issues have been care regardless of their country of resiconcerns about the sensationalist and sciidentified through the pharmacovigilance dence and Alzheimer Europe regrets that entifically baseless media coverage in some system of the European Medicines Agency. people with Alzheimer’s disease in France media claiming that these drugs “killed more y The existence of these medicines has conare excluded from accessing medicines people than they ever helped”. tributed to the development of dementia reimbursed in other European countries. care through an expansion of memory Whilst recognising that these medicines clinics and other specialised services offer- Therefore, Alzheimer Europe and its members “only” provide symptomatic relief for a group ing timely diagnosis, advice and support organisations fully support the campaign and of patients for limited periods, Alzheimer for people with dementia and their carers. on-line petition of France Alzheimer which Europe reiterated its position for the contin- y The discontinued prescription of these calls for the continued reimbursement of ued reimbursement of these drugs: medicines would take away one of the these medicines. y Enough clinical evidence exists to support their use since clinical trials have shown them to be effective not only in improving memory, but also for beneficial effects on behaviour, activities of daily living and well-being. Subsequent meta-analyses and Cochrane reviews have all confirmed this efficacy. y This clinical data on the effectiveness of anti-Alzheimer drugs is supported by testimonies of great numbers of people living with the condition and their carers. y All clinical guidelines such as the European Federation of Neurological Societies (EFNS) Guideline for the diagnosis and management of Alzheimer’s disease support the use of these medicines.

Petition of France Alzheimer

Dementia in Europe

POLICY WATCH

Quality of dementia care in OECD countries under the microscope On 12 June, the Organisation for Economic Co-Operation and Development (OECD) released a report entitled “Care needed – Improving the lives of people with dementia”. Alzheimer Europe catches up with Elina Suzuki, Health Policy Analyst at OECD to discuss the main findings. The OECD report on the quality of dementia care was launched on 12 June 2018. However, the organisation has been active in the field of dementia prior to that. Could you highlight some of the previous key initiatives of OECD in the dementia field? The OECD has been working in the dementia field for quite a while. In recent years there has been an increased focus on international engagement and collaboration around dementia, including the G8 Dementia Summit in London in 2013, and the first Ministerial Conference on Global Action Against Dementia in March 2015. We’ve been actively involved in these processes and have been engaged in research throughout, including publishing our 2015 report Addressing Dementia: The OECD Response and working to develop better internationally comparable indicators for dementia. International collaboration is critical to drawing attention to dementia and making progress towards better dementia care and research. We want to be

a part of this, and I think our strengths, both in terms of research and our role as a forum where governments can exchange knowledge and develop solutions to common problems, means we’re well-placed to do so. Your 2018 report highlights the growing human and financial cost of dementia for society. What were the main findings in that regard? Across the OECD today, it’s estimated that about 19 million people are living with dementia. But dementia doesn’t only affect them. The lives of their friends and family members – many of whom support them as informal carers – are also deeply impacted by the diagnosis. Without the development of a cure or a disease-modifying treatment, it’s expected that nearly 41 million people will be living with dementia by 2050. Already in 2018, the cost of dementia exceeded 1 trillion USD around the world for the first time. It’s clear this is a growing problem that we can’t ignore.

OECD actively participated in G8 Dementia Summit in London in 2013

32 Dementia in Europe

OECD Report Care needed – Improving the lives of people with dementia

“

There’s definitely been progress made in working towards a more timely diagnosis, but we’re still a long way away from where we want to be”

Are countries getting better at detecting and diagnosing dementia? On the positive side, many countries have begun to recognise the importance of giving someone a diagnosis, and the attention on facilitating more timely diagnosis has certainly grown across many countries. Yet we also found that many countries remain poorly prepared to diagnose dementia, despite this increased policy attention. For example, fewer than half of OECD countries can even estimate national diagnosis rates. How can you be sure you’re diagnosing more people, when you don’t know how many are being diagnosed to begin with? We also found that many countries have emphasised a larger role for primary care services in both detecting and diagnosing dementia. Yet despite this, very few countries have developed policies or programmes to strengthen the capacity of primary care physicians to diagnose well, or offered financial or other incentives for them to undertake training and professional development that would enable them to do so. There’s definitely been progress made in working towards a more timely diagnosis, but we’re still a long way away from where we want to be.

POLICY WATCH

Figure 4: People with a prescription of antipsychotics per 1000 people aged over 65, 2015 (or nearest year) 80 80

75.0 70.4

65.0

60 60 50 50

47.6

45.8

40 30 30

30.5

29.7

30.9

31.3

47.8

51.7

56.5

55.7

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34.6

33.7

20 10

A number of countries are developing dementia-friendly or dementia-inclusive initiatives. How widespread have these initiatives become and do they positively impact people with dementia? We were encouraged to find that dementia-friendly or dementia-inclusive initiatives have been launched in over 90% of OECD member states. These initiatives are critical to helping reduce stigma and improve quality of life in the community for people living with dementia. And we’ve seen dementia-friendly initiatives launched across many different parts of the community, from training police forces and fire departments to be dementia-friendly, to large businesses that train their staff to become dementia friends or dementia-friendly transportation and construction methods adopted. This is an area where we think there’s a real opportunity for governments to signal their support for improving dementia care and have a real impact. In many cases, we’ve seen dementia-friendly initiatives develop out of the tireless work and goodwill of committed individuals or local organisations. Their role is indispensable. But it also means that whether you live in a dementia-friendly community can be determined by whether or not you have strong advocates living in your area. In the cases where governments have put their support behind developing dementia-friendly communities – as we’ve seen in the UK and Japan, for example – such initiatives are much more widespread.

What were your findings as to the quality of care for people with advanced dementia? Unfortunately, the quality of care for people living with dementia remains in many cases very poor. Care workers rarely receive the training they need to address the needs of people living with dementia, and the majority of people with dementia in care facilities live in homes that aren’t designed to meet the needs of people living with dementia. For our report, we also collected new data that underscores how poor the quality of care for people with dementia can be. Though there is broad clinical agreement that antipsychotic medications should not be used for people with dementia in almost all cases, we found that rates of antipsychotic prescribing nevertheless vary by a factor of more than two across the OECD, suggesting that this practice is still widespread in many countries. One in 20 people 65 and over received a prescription of antipsychotics in 2015 in OECD countries. This rate is far too high. We hope that measuring this and other quality of care indicators can help countries to better monitor improvements in quality of care going forward. We also found that the quality of care in hospitals is often poor for people with dementia. It’s important that where someone has been diagnosed, hospitals know about this diagnosis, and that their staff is trained to respond appropriately.

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Whether you live in a dementia-friendly community can be determined by whether or not you have strong advocates living in your area” What are the next initiatives which OECD will undertake in the field of dementia?

We’re currently developing a policy brief that looks back on the progress OECD countries have made over the last five years, since the 2013 G8 Summit on Dementia. We’re also continuing to push forward with developing internationally-comparable indicators of dementia, including indicators to improve the quality of care. I think we’ve seen a lot of momentum internationally in the last few years, and we look forward to building on that.

Profile Elina Suzuki is a health policy analyst in the Directorate for Employment, Labour and Social Affairs of OECD. She co-wrote the OECD report “Care needed – Improving the lives of people with dementia” together with Tim Atkins. Elina.SUZUKI@oecd.org @elinasuzuki

Dementia in Europe

DEMENTIA IN SOCIETY

Patient and Public Involvement: Moving from proving to improving Anna-Louise Smith, Research Engagement Manager of Alzheimer’s Society shares her organisation’s experience in involving people affected by dementia in research. Since 1999, Alzheimer’s Society has pioneered the active involvement of people affected by dementia in research through our award-winning Research Network. We are leaders across medical research charities in the way we facilitate patient and public involvement.

We support PPI not just for our own funded research, but also across dementia research in the UK and internationally. The impact so far

‘We can make our research meaningful’

The impact of the Alzheimer’s Society Research Network alzheimers.org.uk March 2018

It’s clear why the Research Network is valued so highly across the dementia research field. Alzheimer’s Society Research Network Report Many of Alzheimer’s Society’s achievements PPI in research is a philosophy whereby in research have come about due to the conresearch is carried out “with” or “by” peo- tributions of our dedicated volunteers. to measure and improved recruitment to ple affected by the condition rather than research studies. Volunteers have also helped “about”, “for” or “to” people. Over the past Over the past 20 years our Network has been researchers with data collection and analytwenty years an increasing value has been at the forefront of making improvements sis and they have supported research teams placed on including the lived experience of including: campaigning for NICE (the National to communicate their research results most patients and the public in research covering Institute for Health and Care Excellence), wid- effectively. the full spectrum of basic science through to ening access to treatments, increasing the healthcare services. focus on reducing antipsychotic use, lobby- Providing the evidence ing for more research into improving care and People with the lived experience of a condition implementing research into practice. In 2017 we decided to collect some of the bring their unique expertise to the research evidence that we had heard anecdotally and process. More and more researchers are now Researchers have told us about the value they produce our first ever impact report for PPI. including PPI in their research, not just because place on the contributions of the Research We surveyed and interviewed members of funders tell them to, but because they believe Network. In our impact report, researchers the Research Network and researchers across that it’s the “right thing to do” and improves explain that volunteers have provided input the UK. the quality and relevance of their work. on identifying the best research outcomes Following this we identified 5 important areas that have been impacted by contributions from our Research Network: Society, Researchers, Volunteers, Research and Alzheimer’s Society. Patient and public involvement (PPI)

5 areas of impact for PPI

34 Dementia in Europe

Researchers explained how Alzheimer’s Society helped them to learn about the importance of PPI, and how to go about involving people meaningfully and effectively. In our report, Mario (a biomedical researcher) stated that he had previous involvement experience. However funding from Alzheimer’s Society provided him with the opportunity to combine his research with his involvement skills, and he has become a key advocate for the approach. Mario thinks that involvement has

Our Research Network volunteers fall into two groups:

Volunteer roles include: n lay reviewer

n people with dementia n people otherwise affected by dementia, who have experience caring for a family member or loved one.

This was reflected by the views of volunteers affected by dementia, such as Kieran: “If research doesn’t have any practical implications, then it is research for research’s sake – is it going to help? Is it going to make more of a difference?” Ensuring that research funded by Alzheimer’s Society makes a difference to people affected by dementia is a crucial aspect of the volunteer role. Our report found that there is overall recognition of a positive shift in researcher attitudes over time towards patient and public involvement (PPI). Despite this progress, the online survey revealed that PPI was seen as less influential in biomedical research than in care research. The case studies, however, demonstrate that there is a place for the Research Network in biomedical research, particularly in contributing to effective communication, accessibility and defining research impact. The evidence around PPI in dementia research is growing but there is still a need to improve the evidence in the academic domain. We have partnered with the journal Dementia to guest edit an edition due for publication in November 2018 to tackle this issue. It will bring 9 new articles into the academic literature sphere that will articulate the impact of PPI. Crucially, this will also help all involved in dementia research to face the challenges in carrying out PPI meaningfully and well. Moving from “proving to improving” We now have evidence that backs up our belief that PPI is not only the “right thing to do” but, when done effectively, results in numerous benefits. We can now talk more confidentially about how the Research Network is having an impact. We are moving the conversation about PPI forward from “proving” why it should be done to “improving” how we can do it in partnership with our researchers. One key area we

DEMENTIA IN SOCIETY

n Grant Advisory Panel (GAP) lay member n Grant Advisory Board (GAB) lay member n Research Strategy Council (RSC) lay member

Volunteers can choose to be involved in several ways, and to give as much or as little time as they wish.

particular benefits for early career researchers: “We need to continue working, educating our new researchers and ourselves as to how we can best incorporate these activities and evidence in our actions. It is really relevant.”

n monitor

n Research Network Area Coordinator

The diagrambelow below demonstrates volunteers influence our research programme throughout The diagram demonstrates howhow volunteers influence the research programme throughout all stages: all stages:

Setting the agenda Putting research into practice

Campaigning for implementation Influencing decision makers

Disseminating research findings

Talking at events and conferences Acting as media spokespeople Reviewing lay documents

Setting research

priorities Contributing to the research strategy

Designing research

Developing proposals Sitting on project steering groups

Roles in the Research Network Shaping ongoing research

Taking part in

consultations and focus groups

Deciding what research to fund

Reviewing grant applications

Monitoring

Sitting on grant

Sitting on project

Interviewing

research projects steering groups

have already identified is raising the number of people living with dementia in the Research Network as their voice is unique and crucial to understanding some of the ethical challenges in delivering dementia research. Moving forward

panels

applicants

these impacts, to understand which methods of involvement achieve the best impact. We will make our evidence base publicly available to support shared learning and a greater understanding of best practice in PPI in both care and biomedical research.

We want researchers and people affected by dementia to unite in partnership. Together, they can ensure the research we support will have the best chance of making a meaningful difference to people’s lives. The Research Network is open to new recruits so there’s never been a better time to get involved. Alzheimer’s Society now aims to increase the number of people with dementia volunteering in the Network, as well as the accessibility of all Research Network volunteer roles. As the Network grows, we will continue to assess

If you are a dementia researcher To discuss working with our PPI volunteers who have an invaluable knowledge and direct experience of dementia: researchnetwork@alzheimers.org.uk Find out more about the Research Network and its impact so far: www.alzheimers.org.uk/researchnetwork

Dementia in Europe

Otsuka: Proud to take the road less travelled Today, more than ever, addressing unmet medical needs for people living with long term illness must go far beyond the conventional. In central nervous system (CNS) disorders, there is still a lot that isn’t understood, and developing new treatments is a challenge. As a pioneer with a venture company spirit, we work with global partners to

develop innovative new options in under-served areas such as Alzheimer’s disease. We see treatment with medicines as only one part of the total care package. From ingestible sensors* to data analytics*, we are also exploring how digital healthcare* technology can help our patients, caregivers and healthcare professionals.

*under development and not available yet

All Otsuka stories start by taking the road less travelled. For information about Otsuka Europe please contact +44(0)203 747 5000 or email: med.aﬀairs@otsuka-europe.com

www.otsuka-europe.com Please always consult your treating physician regarding prescription medications for your condition May 2018 OPEL/0518/A786/1003

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24.05.18 17:20

DEMENTIA IN SOCIETY

Eating well with dementia Cormac Cahill, Communications Manager for The Alzheimer Society of Ireland, presents the organisation’s research into and campaign for eating well with dementia. In Ireland today there are 55,000 people living with dementia and research shows that people with dementia can struggle to eat properly and may not eat or drink well to support their needs and well-being. Research which was carried out by Ipsos MRBI and commissioned by Nutricia Advanced Medical Nutrition and The Alzheimer Society of Ireland (ASI), found that the difficulties people with dementia are experiencing include the person forgetting to eat (58%), forgetting they have eaten and eating again (54%), finding it difficult to finish meals (51%) and being too tired to eat (36%). The research also found that a majority of survey respondents reported a change in their sense of taste (59%) and smell (56%), while 52% reported a change in thirst. 56% reported greater difficulties chewing and 44% in swallowing food. Further findings revealed that 70% experience weight changes and 60% report changes in appetite, following diagnosis with dementia. 37% of respondents had a weight increase and 34% a decrease. 32% reported a decrease in appetite and 28% an increase.

“

The initial research also highlighted challenges with shopping and cooking. 82% reported that it could be difficult to get to the shops for food, 88% that shopping can be confusing and 70% that family and friends may manage shopping on their behalf.

Following the tips in Eating well with Dementia will ensure that people are getting all the nutrients that they need” enjoy and be involved in meal preparation and mealtimes; and how to deal with weight loss, weight gain and other nutritional issues.

Basic tips, which are included in the booklet, including keeping the table setting simple, establishing a routine, allowing sufThe research reported that very few (6%) ficient time to eat, being flexible around food retained a role in meal preparation follow- choices and not worrying about neatness, will ing diagnosis and stated that more than half be of huge assistance to family members and (54%) had not actively searched for infor- carers across Ireland. mation on managing diet and nutrition following diagnosis. The ASI’s Head of Advocacy and Public Affairs, Tina Leonard, believes that some of the tips Practical tips in new “Eating well with that are contained in this booklet can ensure dementia” booklet that people with dementia can get the nutrients that they need. Following on from the research, a new booklet has been developed for families and carers “Everyone who has dementia is different. in Ireland called “Eating well with Demen- Some people can struggle to eat enough tia”. This booklet, which was launched in throughout the day to meet their nutritional September 2017, offers practical tips and requirements, while others may forget to eat, helps families and carers to understand how thinking they have already eaten, or strugdementia can affect a person’s appetite and gle to finish a meal,” she said. “This can all experience with food. become more challenging as dementia progresses. Eating a healthy, balanced diet is Eating well with dementia also looks at how essential to maintaining good health and to meet nutritional needs of someone with following the tips in Eating well with Demendementia; how people with dementia can tia will ensure that people are getting all the nutrients that they need.”

Notes on the Survey This research is based on a total of 107 dementia, whether or not they were comsurveys. A total of 315 surveys were distrib- pleting the survey. uted by ASI, with a response rate of 34%. The ASI carried out a focus group with The survey could be completed by either people with dementia to gather evidence (i) the person with dementia (ii) a family for the booklet. The findings of this focus member / friend or (iii) with the help of group did not contribute to the overall that person. statistics, but added weight to overall evidence and tips contained in the final All questions and survey responses were document. addressed and refer to the person with

“Family and friends can play a key role. Some of the tips contained in this booklet include making sure that people with dementia have some company at mealtimes and that mealtimes are sociable and enjoyable events for all of the family. Other simple tips include encouraging people to eat finger food should using cutlery be an issue, or if people like to walk around during meal times.” In total, 50,000 booklets were produced and are helping people with dementia all over Ireland. The brochure was distributed to 1,300 health display stands nationwide for Dementia in Europe

DEMENTIA IN SOCIETY

a six-month period, including GPs health cen- Public Policy and Social Research and the tres and hospitals. It reached over 2,000 GPs overall Grand Prix winner. These awards, now and 1,100 Practice Nurses. in their ninth year, recognise market research excellence across the entire industry in IreSuccessful Launch land and Ipsos MRBI retained its Grand Prix crown from 2016. During the week of the launch, the ASI Alzheimer National Helpline 1800 341 341 Judges commented that an extremely chalhad a 66% increase in calls. In addition to lenging context for research was addressed this there was a huge reaction to the launch with an innovative, sensitive and meaningful of the booklet in the national and regional methodology, with a great understanding of media in Ireland. In total there were seven the challenges facing dementia patients in national media pieces and 14 regional pieces. meeting nutritional needs. The booklet has proved a huge success with the book in huge demand since its launch winning research awards in November 2017 and also being presented to members of the Irish parliament in June.

At the time of the award, Director at Ipsos MRBI Tarik Laher said: “We are thrilled with this double award win, which is proof of the value, insight and methodological excellence that this research has delivered. It would not have been possible had people with demenAwards tia not shared their stories and opinions so openly and honestly and this win is a testaIn November 2017, Ipsos MRBI, in partnership ment to them. We hope that the learnings with Nutricia Medical and the ASI, were suc- from this project help lay the foundation for cessful in the Research Excellence Awards 2017 better nutritional care for those with demenfrom the Marketing Society in two categories, tia into the future.” Fiona Rafferty, Cormac Cahill, Tina Leonard and Tarik Laher with research award

Dementia in Europe

Top tips for eating well with dementia: y y y y y y y y y y

Keep the table setting simple Establish a routine Distinguish food from plate Company at mealtimes Familiarity is important Be flexible around food choices Allow sufficient time Be flexible to food preferences Don’t worry about neatness Use finger food.

All-Party Oireachtas Group In June 2018, based on the success of the booklet, the Co-Conveners of the All-Party Oireachtas Group on Dementia Mary Butler TD and Senator Colette Kelleher hosted a Building Dementia Awareness event in the Oireachtas in Leinster House in Dublin on the topic of nutrition for people with dementia. The group believes that is an important element of dementia that the public needs to be

DEMENTIA IN SOCIETY

aware of so that we can have fully considered policies and funding for appropriate services and supports. At the awareness session in June Tarik Laher from Ipsos MRBI spoke about research outcomes; member of the Dementia Carers Campaign Network (DCCN) Ray Cregan spoke about caring for his father, Paddy; Tracey Waldron Senior Dietician, Medicine for the Elderly, St James’ Hospital in Dublin spoke about nutrition and dementia. The meeting was attended by 21 members of the Irish Parliament who were all very interested in the topic and campaigning on the key issues that were raised. The ASI is currently linking in with our colleagues in the Czech Republic Česká alzheimerovská společnost, o.p.s. to explore how we can share this work. The booklet is available through the ASI’s Alzheimer National Helpline and as a download through the ASI’s website and still continues to provide people with dementia and their family carers with essential tips for eating well with dementia. “Dementia can affect taste, smell and thirst senses and sometimes people find that not only recognising food can be difficult, but identifying cutlery can be a problem too,” said former family carer and advocate, Ray Creagan. “So there are lots of little things that we all take for granted that need to be taken into consideration. Eating well with Dementia is of huge help to carers who are just looking for small, practical tips to ensuring that their loved ones get the best nutrition available to them and continue to eat well.”

Minister Jim Daly & ASI CEO Pat McLoughlin at booklet launch

All-Party Oireachtas Group on Dementia The All-Party Oireachtas Group on Dementia was launched in 2016 and is run in partnership with the ASI who provides a secretariat along with expert advice to the group. The group was established amid growing concerns across the political spectrum of an expected trebling of numbers of people set to develop this challenging condition over the next three decades and the urgent need to plan for this eventuality now.

The group examine a number of specific areas including building understanding, consensus and cross party support for long term planning and increased investment to support people with dementia and their carers. TDs and Senators from across the main parties, as well as Independents, have joined this group.

Contact The Alzheimer Society of Ireland +353-1-207 3800 info@alzheimer.ie www.alzheimer.ie @alzheimersocirl The Alzheimer Society of Ireland

Dementia in Europe

DEMENTIA IN SOCIETY

Dementia Friends: an initiative gaining support across Europe Sarah More from Alzheimer’s Society presents Dementia Friends and how the idea is spreading across Europe. What is Dementia Friends?

Following the adoption of the WHO Global action plan on dementia 2017–2025, Dementia Dementia Friends is the biggest ever initiative Friends is a powerful tool to enable Member to change people’s perceptions of dementia. States to work towards the target that “50% It aims to transform the way people think, of Member States must have at least one act and talk about the condition. The volun- dementia-friendly initiative by 2025”. teer-led movement tackles the stigma and discrimination people with dementia can How did Dementia Friends begin? face globally. Dementia Friends take action, big and small, to support those living with Alzheimer’s Society was greatly inspired dementia to feel supported and included in by the way Japan has raised awareness their communities. of dementia through their volunteering programmes, namely the Ninchisho There are now 40 members of the Global (Dementia) Supporter Caravan programme. Dementia Friends Network working in dif- The UK government was keen to develop a ferent countries to change attitudes towards similar campaign that would increase voldementia on a global scale. With over 14.7 unteer action as well as contributing to the million Dementia Friends around the world, Prime Minister’s Challenge on dementia together we are part of the world’s biggest (its national dementia strategy). With this social action movement on dementia, raising inspiration, Alzheimer’s Society created the awareness and challenging stigma. Dementia Friends programme in 2013 to help

raise understanding on an individual level and encourage social action. What has been the impact of Dementia Friends in England and Wales? Dementia Friends in England and Wales has now reached over 2.6 million people since its launch and has been shown to play a significant role in supporting a societal shift towards acceptance and inclusion of people affected by dementia. This breaks down to 1 in 30 people in England and Wales committing to action on dementia! The results of a 2016 Dementia Friends impact survey showed that 86% of people felt that they had a better understanding of dementia through Dementia Friends and that 84% of people believed that Dementia Friends was inspiring communities to take action. The next goal is to create 4 million Dementia Friends by the end of 2020 and also to increase the social action element of the programme. Why has Dementia Friends been so successful? y Simplicity – Dementia Friends and its key messaging aims to challenge the misconceptions people hold about dementia and change public opinion in an easy-to-understand and engaging way. y Accessibility – Dementia Friends are created via face-to-face Information Sessions, Dementia Friends five key messages: y Dementia is not a natural part of ageing. y Dementia is caused by diseases of the brain. y Dementia is not just about losing your memory. y It’s possible to live well with dementia. y There is more to the person than the dementia. To become a Dementia Friend, a person needs to understand these five key messages and then commit to at least one action that will make their community a more dementia inclusive place.

The global Dementia Friends Movement

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an online video and through roll out with partner organisations. The range of routes available makes Dementia Friends accessible for a variety of audiences. y Replicability – The Dementia Friends programme and activities can be easily replicated around the world. Countries are welcome to adapt resources to ensure cultural relevancy and understanding by local communities. How did Dementia Friends spread across Europe and the world? Given the success of the Dementia Friends model in the UK, Alzheimer’s Society committed to support other countries to develop and deliver their own Dementia Friends programmes or similar initiatives. One of the key commitments in the Prime Minister’s 2020 Challenge on Dementia, was for “England [to] lead the way in turning Dementia Friends into a global movement, including sharing its learning across the world and learning from others”. This commitment was confirmed at the WHO Ministerial Conference on Global Action Against Dementia in March 2015.

Members of the Global Dementia Friends Network at the recent ADI Conference in Chicago

associations registered their interest in implementing their own national programmes. In 2016, Dr Chan became a Dementia Friend at a special joint Dementia Friends/Ninchisho Supporter Caravan session on the margins of the G7 Health Minister’s Meeting in Japan – demonstrating the power of the programme to engage support. What is the Global Dementia Friends Network?

well as supporting countries to develop new Dementia Friends programmes, members are working together to share, support and collaborate for a truly global dementia-friendly movement championing the rights of people affected by dementia. Every country’s Dementia Friends programme is delivered in a unique way, depending on the cultural context and the size and capacity of the delivery organisation. What has been the reception for Dementia Friends in Europe?

Over 80 countries attended the conference in Geneva. Dr Margaret Chan, the former WHO Director-General, made reference to Dementia Friends and a number of Alzheimer

The Global Dementia Friends Network unites countries who have committed to devel- Europe is leading the roll out of Dementia oping and delivering their own national Friends globally with 15 national programmes. Dementia Friends or similar programmes. As These are: Bulgaria, Croatia, Denmark, England & Wales, Finland, Germany, Gibraltar, Moldova, Netherlands, Northern Ireland, NorTable 2: Number of dementia friends in European countries way, Portugal, Scotland, Slovenia and Ukraine. Country Number of dementia friends Dementia Friends launches have recently been celebrated in Portugal and Norway (with Bulgaria Launch TBC the Norwegian Prime Minister becoming NorCroatia 216 way’s first Demensvenn (Dementia Friend). Denmark 60,666 Finland is in the process of finalising their launch to take place later this month. Finland 162 England and Wales

2,646,459

Germany

31,621

Gibraltar

119

Moldova

Launch TBC

Netherlands

128,621

Northern Ireland

15,000

Norway

4,100

Portugal

684

Scotland

65,374

Slovenia

Launch TBC

Ukraine

Launch TBC

Altogether there are almost 3 million Dementia Friends in Europe! By working together on Dementia Friends, Europe can become one of the most dementia-friendly places to live in the world.

Contact If you are interested in finding out more about the Global Dementia Friends Network or how to join, please contact Alzheimer’s Society via: dfinternational@alzheimers.org.uk

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A look behind the headlines: What happens after the success of the first clinical trial of a diseasemodifying treatment? Alzheimer Europe interviewed Dr Anders Wimo from Karolinska Institutet, a member of the organisation’s Expert Advisory Panel to discuss the challenges awaiting the introduction of new disease modifying treatments for Alzheimer’s disease.

Since biomarker based diagnosis comes at a cost, couldn’t we reduce costs by careful screening and only applying those to people who would be most at risk? It would indeed not be realistic or justifiable to carry out an extensive diagnostic battery on everyone. We need to find the right balance in terms of cost and effectiveness in making sure we correctly identify people with and without Alzheimer’s disease whilst also avoiding misdiagnosing people, particularly false positive cases.

We will definitely need more targeted approaches and I am happy to be involved in an IMI-sponsored research collaboration called MOPEAD which will look at which “Models of Patient Engagement for You recently published a provocative arti- This all sounds very hopeful and positive! Alzheimer’s Disease” is the most effective cle in the Journal of Alzheimer’s disease Why were you referring to a potential night- in identifying people with prodromal AD entitled: “The End of the Beginning of the mare in your article in that case? and mild AD dementia. Once this project Alzheimer’s Disease Nightmare: A Devil’s produces its results, we will hopefully have Advocate View” in which you highlighted Let us have a look at the recent paradigm a better understanding of which strategies a number of challenges which would await shift in the Alzheimer’s field. We now know work best in identifying patients. us, if the first disease-modifying treatment that the actual brain pathology starts up to for Alzheimer’s disease is approved. Are we twenty years prior to any symptoms and that There are still many comclose to such a treatment? earlier interventions in the pre-dementia stage may have the highest chance of preventing or pounds in the pipeline and Recently, there have been quite a few high delaying the symptomatic phase of the disI am hopeful that we will soon profile failures of phase III clinical trials ease. This shift means that we have potentially of disease-modifying medicines. However, doubled or even tripled the numbers of people see quite a positive and drathere are still many compounds in the pipe- who may benefit from a treatment, as we will matic change of how we will be line and I am hopeful that we will soon see need to reach people at asymptomatic or very treating people with Alzheimer’s quite a positive and dramatic change of how early symptomatic stages. At the same time, we will be treating people with Alzheimer’s this poses the question of how to detect and disease” disease. At AAIC in Chicago recently, very diagnose people at these early stages. Anders Wimo promising results were presented from a phase 2B trial. There have been significant advances on how we can diagnose Alzheimer’s disease even We also need to bear in mind though, that in the prodromal and asymptomatic stages. You have highlighted a number of chalthere will not just be positive developments Wouldn’t this help address the diagnostic lenges on how to identify patients who on the treatment front, but also on the pre- question? would benefit from new treatments. Do vention front. A number of epidemiological you foresee similar problems for the monstudies and some intervention trials seem to Biomarkers such as cerebrospinal fluid or PET itoring of treatment? indicate that prevention and risk reduction scans for the detection of amyloid and tau strategies can have and are having an effect. have indeed revolutionised how we are able For the current medicines in the Alzheimer’s to diagnose Alzheimer’s disease. Please bear field, it is possible to start these drugs and Add to that that people are being diagnosed in mind though that these procedures are continue them in primary care. With the new earlier in the disease process and that more currently only being conducted in research disease modifying medicines, it is not likely and more people are able to lead meaningful centres and specialised memory clinics. We that general practitioners will be able to play lives after their diagnosis. are thus having access and infrastructure this role. Therefore, the number of patients problems in developed countries and these in memory clinics will increase considerably problems would be further exacerbated in and they will undoubtedly have problems in low and middle income countries. managing and monitoring the treatment.

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So far, we have discussed diagnostic and infrastructure issues. What are your views on the introduction of new treatments from a health economist’s perspective? The costs of current treatments is really low since these drugs are now all available as generic medicines since the expiry of their patent. Any potential future disease-modifying treatment will of course cost considerably more. At this stage, it is difficult to evaluate the cost-effectiveness of such treatments, so I can ask a number of questions myself. How does short-term efficacy shown in a trial translate into long term clinical benefits such as delays in later institutional care needs? Will the cost savings be mainly in the social sector due to a reduced need for informal and formal care and will the cost mainly be in the medical sector? How will payers in one sector act if benefits occur in another sector much later in the course of dementia? As a health economist, I have been involved in the development of a number of models and a recent simulation paper of a very positive disease modifying treatment which prevented the conversion from prodromal AD

to AD dementia in 50% of patients showed no cost savings and surprised even us.

involving cardiovascular risk factors, nutrition and lifestyle can have a positive effect on cognition. However, we will need to confirm This was mainly due to two facts since these these results in other studies and to show treatments had to be given to patients dur- whether these approaches will also have an ing the mild cognitive impairment period effect on the risk of conversion to dementia. where they incur few care costs and since these treatments actually prolonged survival Thanks for summing up the concerns you time of patients. raised in your article as a “devil’s advocate”. Can you leave us with some positive outlook? Within the framework of the International Pharmacoeconomic Conferences on AD I have tried to highlight some of the challenges (IPECAD), we are currently working on develop- that will await the first company which is in ing transparent open-source models to make the fortunate position of having a successthese simulations and forecasts and to ensure ful trial with statistically positive results. The the underlying hypotheses and scenarios can challenges will be slightly different whether be easily understood and compared. the results are clinically modest or more significant. In the latter case, there will quickly be With all the challenges you foresee, should a rising demand from patients, families and we prioritise prevention over disease-mod- advocacy organisations, but also from the ifying treatments? research and medical sector. As the budget impact would be enormous, a step wise introIn my opinion, there is no contradiction duction with filters is probably a way forward. between prevention and disease-modifying At the same time, we could explore “conditreatments and we should of course pursue tional market approval” where the treatment both strategies. Thanks to the FINGER study could be approved under certain conditions, (Finnish Geriatric Intervention Study to Pre- but where additional data on efficiency, supvent Cognitive Impairment and Disability), port and cost-effectiveness would need to be we know that a multi-domain approach presented later.

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There is no contradiction between prevention and disease-modifying treatments and we should of course pursue both strategies” Anders Wimo

Profile Anders Wimo is Adjunct Professor in Geriatric General Medicine at the Department of Neurobiology, Care Science and Society at the Karolinska Institutet. Anders.Wimo@ki.se

Anders Wimo speaking at ADI Conference in Chicago (2018) (c) LaCour Images

Dementia in Europe

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History and activities of CEAFA, the Spanish Alzheimer’s Confederation Jesús Rodrigo, Executive Director of CEAFA, gives an overview of the organisation’s history and current priorities. CEAFA is a national non-Governmental Organisation in Spain which works to put dementia on the political agenda, seeking to secure the necessary societal commitments, by using its knowledge and experience to represent and defend the interests, needs and rights of all people living with dementia.

and carers throughout Spain. Together, this network consists of 87,693 members, 3,983 employees and 5,208 volunteers.

In 1997, CEAFA was declared a Public Utility Entity. In 1999, the Ministry of Labour and Social Affairs awarded to CEAFA the Golden Cross of the Civil Order of Social Solidarity The CEAFA network of associations for its development of home care and assistance projects for people with dementia, as The organisation is composed of 1 Confed- well as for its work to support families of eration, 12 Autonomous Federations and 6 people with dementia. In 2002, Her Majesty Provincial Associations that bring together Queen Sofía of Spain accepted the position more than 300 local associations which sup- of Honorary President. port people with dementia, their families VII National Congress of CEAFA in the presence of H.M. Queen Sofía, Malaga, 2017

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Lobbying for the recognition of dementia as a priority More than 28 years of history supports the work and representations made by the Confederation. CEAFA is a reference entity at a national level for government agencies, private entities and society in general. It is not only committed to institutional representation but also to political action, operating and carrying out activities in order to influence national policies, encouraging a comprehensive approach to policies related to dementia.

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Since 2010, CEAFA has campaigned at a national level on the need for an Alzheimer’s State Policy (National Dementia Plan/Strategy), embedded in policy for a set period of time and unaffected by any potential change in government. As a result of its work over the years, CEAFA is part of the National Dementia Group which is promoted by the IMSERSO (the institute for older people and social services – part of the Ministry of Health, Social Services and Equality) and which is coordinated by the Alzheimer’s State Reference Centre of Salamanca. In this group, CEAFA has played an active role in representing the collective views and concerns of its members.

“

Since 2010, CEAFA has campaigned for an Alzheimer’s State Policy”

different Institutions of the Autonomous Communities of the country. At a societal level, CEAFA is committed to education and training on matters related to dementia, articulating how training may be cascaded to reach the largest number of people and groups possible. A knowledge base is continually updated to allow local/ regional members of the Confederation to prepare and develop their own competencies, whilst allowing CEAFA, at a national level, to be recognised and valued as reliable reference point in relation to the effects and consequences of dementia.

Every two years, CEAFA organises a National Congress with the aim of providing updated information to the main actors linked to the disease. In addition, the Congress provides a platform for networking, meeting Jesús Rodrigo and exchanging knowledge and experiences among the people who are part of the ConfedThe main objectives of the National Demen- eration and wider society, helping facilitate tia Group are: a more coordinated and comprehensive approach to dementia. y To facilitate a network among the participating institutions. Supporting research y To establish common objectives for a comprehensive approach to dementia. Another strand of CEAFA’s work is to support y To promote the exchange of knowledge, basic and clinical research as a way of contribexperiences and good practice among uting towards finding a cure for Alzheimer’s professionals. disease and dementia. The organisation also y To communicate to society the pro- works to support social research through gresses made in the fight against the social-health projects which seek to develop disease and the improvements to peo- measures and tools that improve the quality ple’s quality of life. of life for people with dementia, their families y To share information about plans, pro- and carers. In order to conduct this research, grammes and activities in dementia many social researches have sought support developed across the country, with the and involvement from the confederal strucaim of coordinating socio-health actions ture and our panel of experts. in order to develop them at a state level in the field of dementia. These investigations have been made available to the institutions, to private companies Raising awareness about dementia and to society as a whole, serving as basic documents for consultation, information, Another activity of the body is to raise aware- training and practical application. Social ness among the population about dementia. research studies have allowed us to have One way in which this is done is through the a broad knowledge about the social reality annual World Alzheimer’s Day (21 Septem- experienced by people living with dementia ber), during which a press conference is held, and to propose measures for change. communicating the views and calls to action of the collective to the institutions and rais- Additionally, CEAFA works with numerous ing awareness in society. Calls for action are private entities in different social-health adopted by CEAFA and then taken to the projects that allow us to know and to give

visibility to the demands and needs of the collective. On many occasions, these have become proposals for change, support and action that are presented to government agencies to establish lines of action. With regard to the role we play in society, CEAFA is committed to represent and defend all people affected by dementia. To achieve these ends, all of society must be involved and recognise the problems that dementia presents, not only at the present time, but also in the medium and long term. To this end, information and social awareness campaigns are promoted through holding events, including those on World Alzheimer’s Day, through the Alzheimer’s Disease National Congress, information and outreach days, street-level actions by AFAS etc.

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It is essential that society becomes aware of the effects of Alzheimer’s disease” Jesús Rodrigo

It is essential that society becomes aware of the effects of Alzheimer’s disease, to ensure that those in a position to resolve these issues do so in such a way as to ensure that society as a whole has a role to play, coordinated in such a way to ensure that they support the demand for dementia-specific plans and policies.

Profile Jesús Rodrigo has been the Executive Director of CEAFA since 2005 and supports the Board of the Confederation. He is a member of the Coordination Committee of the National Dementia Group tasked with elaborating the National Alzheimer’s Plan. He also took part in the Technical Committee of the Neurodegenerative Diseases Strategy of the Health National System and is a Board member of Alzheimer Europe and Alzheimer Iberoamerica (AIB). direccion@ceafa.es

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Fundación Alzheimer España: “We fight to be remembered” Our colleagues from Fundación Alzheimer España (FAE) give us an overview of the organisation’s history and current priorities.

“

Fundación Alzheimer España was created Our activities have been almost thirty years ago by a group of health recognised by awards from professionals (researchers and medical specialists), lawyers and family members and institutions and prestigious promotes multidisciplinary training in the entities, among which the Gold defence of the Alzheimer’s disease collective in Spain. Today, the Foundation is part Medal of the Spanish Red Cross” of the Technical Committee of the “Strategy on Neurodegenerative Diseases” of the Spanish National Health System which will result and resources focused on the disease. Some in the future National Alzheimer’s Plan. of the activities have been recognised by awards from institutions and prestigious Among its statutory objectives, FAE wishes entities, among which the Gold Medal of to promote the early detection of the dis- the Spanish Red Cross, the Social Prize of ease, which allows to start working with the the Spanish Society of Neurology (SEN), the cognitive abilities of the patient and thus pre- ABC Solidario Award, the Santander Bank vent their rapid deterioration. In addition, FAE Social Prize, the 2nd Bankia Social Research wishes to design ad hoc projects and plans Award, etc. for each phase of Alzheimer’s disease. For the 28th Alzheimer Europe Conference of For FAE, it is essential that patients and their 2018, very focused on the family, FAE wishes families are not alone with this disease. It is to enhance the following: therefore essential to promote active ageing and help to prevent dependence, as recom- 1. Behavioural disorders, main burden for mended by IMSERSO, the Institute for the informal caregivers Elderly and Social Services of the Ministry of Health. The absolute priority of the FAE is to give a voice to the patient and his/her family. For FAE makes available to patients, their fam- this, it is vital to work on the psychosocial ilies, caregivers, professionals and society aspects that go hand in hand with dementia in general, a series of informative activi- and the impact that it causes in the life of the ties, training, technological innovations patient and in that of his or her surroundings.

In this sense, FAE carried out an ambitious and rigorous survey at a national level, with family caregivers of Alzheimer’s patients, with a sample that regrouped 1,402 respondents. One of the conclusions of this study is that what most alters the life of the caregivers are not the cognitive or memory disorders of the patients, but behavioural disorders. These occur in more than 90% of cases. These behavioural disorders are revealed as the main cause of burden for caregivers and the main reason for institutionalisation. Apathy appeared as the most common disorder identified by families. 2. Mourning FAE also carried out the first research project in Spain on the situation of caregivers of Alzheimer’s patients after the death of the family member they were caring for. This study was conducted in collaboration with the Department of Psychology of the Complutense University of Madrid. Amongst the conclusions, 30% of caregivers had to continue with the mental health treatments that they were prescribed before the death of the family member they cared for. Many of them continue with the support of a RESPALZ type programme during the mourning period. 3. The important role of non-pharmacological therapies One of the objectives of FAE is to support family members and caregivers through workshops and training courses to address the disease at stage, as well as legal support, training for home help aides, volunteering, etc. It is vital that patients maintain maximum autonomy possible in the activities of daily life. Different non-pharmacological therapies are being developed, with programmes such as group psycho-stimulation, comprehensive care programmes (JAPI), music therapy, RESPALZ, meetings between caregivers, shared play meetings, legal advice, etc. FAE was a pioneer in Spain in carrying out with the support of the National School of Health (ENS) the first Alzheimer’s diploma for health professionals, from primary care physicians to nurses, etc.

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In addition, FAE works in close collaboration with hospitals to help them attend, as far as possible, patients and their families within the framework of a public institution.

the corporate social responsibility (CSR) pro- FAE will continue to adapt to the evolution grammes of private and public companies. of knowledge about this disease, whether at the level of basic or psychosocial research, In addition to having a web page, social net- including new technologies, and, above all, works (Facebook, Twitter), FAE participates in adapting to the new profile of the 21st cen4. New technologies and virtual media different projects that rely on modern tech- tury caregiver. nologies to help patients and their families, FAE launched an Internet radio programme as well as using them to encourage greater Profile dedicated exclusively to Alzheimer’s disease. development in different areas of research. This proved to be a particularly successful Fundación Alzheimer España communication channel, which, in its 5 years FAE is also a founding member of HISPAROB, Avenida Daroca 80, Local 28017 Madrid of existence, had more than 100 programmes National Platform of Robotics and collaboSpain recorded with experts, as well as almost two rates in the robotics project “Robalz” with million reproductions and downloads, both the Carlos III University and the “Domalz” www.alzfae.org in Spain and Latin America. project, a home automation platform for fae@alzfae.org improving the independence of patients at @AlzheimerEsp This radio channel joins other communication home. These projects will result in a series actions carried out by FAE to raise awareness of tools aimed at maintaining the independin society about the Alzheimer’s problem, ence of the patient for longer and, at the such as press conferences and media cam- same time, support and relieve the caregivpaigns, events, national and local actions to er’s burden. These projects will be presented mark World Alzheimer’s Day etc; thanks to during the Conference.

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The political priorities of people with dementia in Spain Ildefonso Fernández is a member of CEAFA’s Expert Panel of People with Dementia. In this article, he shares some of his personal experiences and highlights some of the political priorities of the group. The Expert Panel of People with Dementia (known as PEPA by its Spanish acronym) was instigated by CEAFA and is comprised by a number of persons who have been diagnosed with Alzheimer’s disease at a younger age. In Spain, people with early-onset dementia now represent about 10% of the total number of people with dementia. Until recently, the public perception of Alzheimer’s disease was of people at an advanced age. However, over 100,000 people in Spain have been diagnosed, just like me, during their professional career and find themselves confronted with the difficulties linked to the diagnosis prior to their retirement. The diagnosis therefore comes at a time in our lives where we still have a lot to say. The moment of the diagnosis A critical moment in the course of every disease is the moment when the diagnosis is made. Nobody likes to receive bad news and receiving a diagnosis, regardless of the disease, is always difficult. In some cases, the diagnosis comes to confirm what we have already suspected. In my own case, I need to say particular thanks to the neurologist who gave me the diagnosis with the greatest possible empathy. He really put himself in my position and was able to transmit the diagnosis with great clarity and took the time to provide all the needed information. This is how it should be, in every case and for every patient.

Personally, I would also like to volunteer to participate in a clinical trial, but for that to happen, I need to know whether there are trials, where they are, who is responsible for should address the patient directly to provide them and what the objectives of the trial are. the information. In Spain, we should improve this type of communication, as well as trial recruitment which In addition, it is important how the diagno- should become more agile and efficient. I am sis is being communicated. It should be done sure, we would all gain from this. Wouldn’t with plenty of time to allow the patient to it be great if we were the last generation of ask questions. Once the diagnosis has been people affected by Alzheimer’s disease? given to the patient, the doctor should also include, when possible, the family to ask Wouldn’t it be great if we questions. The communication should also be done in an accessible and easy-to-underwere the last generation of stand language and provide information on people affected by Alzheimer’s the disease, possible treatments, but also information on the local Alzheimer’s asso- disease?” ciation. In my case, I wanted to highlight how important this was. I felt very down after the diagnosis, but the professionals I met at AFA Our Expert Panel also considers research to be RIOJA, my local association, were able to help important and wishes to support all types of me enjoy life again and also to make me want research at the same level and recommends to collaborate so that others have the same that we increase the budgets for research. opportunities that I received. As we are hoping for progress from research, Our group discussed the importance of receiv- we also need to ensure that our health and ing a timely diagnosis and even of receiving social care sector is prepared for Alzheimer’s information at the prodromal stage of the dis- disease and for us, both sectors are equally ease before dementia. Even without a curative important. The question of how to improve treatment, I feel that it would allow a person services would be worth its own contribution, I and the family more time to prepare and to put would therefore like to limit myself to promottheir affairs in order. Our group also wishes to ing person centred care. Planning for services promote this timely diagnosis and sees this as should therefore start from the rights of peoan important development for the person and ple in need of these services rather than from his/her family, but also for research. a purely economic and budgetary point of view.

This brings me to the subject of research. Although, I am not an expert in this field, I am aware that a great number of people is involved in research and looks into ways of curing., preventing, delaying or modifying And this brings me to the first recommenda- the disease. It is also important to see that tion of our group: the diagnosis should be there are research efforts underway in basic, communicated to the patient and the doctor clinical and social research.

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As a person with the disease, it is frustrating though to see that despite all these research efforts, we have had no new medicines. Also, we seem to be spending more money for research into hair loss than we spend on Alzheimer’s disease. I would therefore dare to make the recommendation that the different research teams need to coordinate better in order to truly exchange the knowledge that is being generated.

“

When talking about rights, it is equally important to also think about employment. A diagnosis in itself should not be a reason to lose your job and to become “incapable” from one day to the next. Shouldn’t there be possibilities to adapt jobs, profiles and responsibilities to the capabilities of the person. Of course, this would have to be done on

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a voluntary basis, but I can assure you that I would have liked to continue to work for the company to which I had dedicated a good part of my life. Again, our group feels that these employment questions need attention at a policy level and wishes to support the initiative of CEAFA to create more dementia-friendly companies. Last but in no ways least, I want to discuss the family environment. A diagnosis does of course not only impact the person, but also the whole family and the needs of family carers have to be addressed supported. If people with dementia wish to remain who they are (“sigo siendo yo”), family members and carers also have that same right.

during the early stages of the disease where persons still have a lot of their capacities. This will make us feel valued and useful and will make us feel less of a burden.

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I would have liked to continue to work for the company to which I had dedicated a good part of my life”

My PEPA colleagues also recommend that family members should help to promote the autonomy of the person with dementia as far as possible and delay guardianship or “incapacitation” measures for as long as If I can make a recommendation to family car- possible. Instead, empowerment should ers, it is that they should think of giving some be something that should be actively space to the person diagnosed, especially encouraged.

These are some of the recommendations that our group developed and we really hope to see these implemented in the future Spanish National Alzheimer’s Plan. Our group actively contributed to the development of such a plan and we hope to see the launch of this important document very soon.

Profile Ildefonso Fernández was diagnosed with Alzheimer’s disease. He joined the Expert Panel of People with Alzheimer’s disease in 2017 and was one of the keynote speakers at the Annual Meeting of CEAFA in Málaga in November 2017. The above is a summary of some of the key points of his presentation.

Ildefonso Fernández with CEAFA President Cheles Cantabrana at Málaga Conference

Dementia in Europe

SPOTLIGHT ON SPAIN

Research on Alzheimer’s disease and other dementias in Spain Adolfo Toledano provides an overview of Alzheimer’s research in Spain from its historical beginnings to current day priorities. Historical background

out his doctoral thesis with Alois Alzheimer (1905–6) on rabies and later worked with him Spain has been very interested in Alzheim- on brain neurodegeneration. er’s disease and other dementias since Alois Alzheimer first announced his investigations In 1908, Alzheimer was invited to lead Washin 1906. Many histopathologists, neurologists ington’s neuropathology laboratories in the and psychiatrists have since devoted their USA (Government Hospital for the Insane) efforts to understanding Alzheimer’s disease to develop his research on his “new disease”. and its causes. The most important reference He recommended Achúcarro for the position, to the direct involvement of neurohistolo- who accepted and served for two years in the gists and neuropathologists comes from the position. During this time, one of his main school of Santiago Ramón y Cajal (a primary contributions was to identify the important exponent of the new field of neuroscience role of glial cells in neurodegeneration, a which had received the Nobel Prize in 1906). factor which has been revisited and recognised as crucial in Alzheimer’s disease in The study of alterations to the brain as a result recent years. of Alzheimer’s disease were of special importance owing to the novel use of a metallic On his return to Spain, Achúcarro was staining technique utilised by Cajal and recruited by Cajal for his laboratory, his chair his contemporaries (including Lafora, Tello, in the Complutense University of Madrid and Gayarre, Valverde, Del Río Hortega etc.). Of for the General Hospital of Madrid, where he particular importance was the contribution created a department with laboratories of hisof Nicolás Achúcarro, a researcher who carried topathology, neurology and psychiatry for the

Nicolás Achúcarro (A) in the Santiago Ramón y Cajal (C) research team

50 Dementia in Europe

study of dementia. Unfortunately, Achúcarro died in 1918 aged 38, but not before leaving an important school in clinical and basic neuroscience for Alzheimer’s and related neurodegenerative diseases. For several decades (1920–1960), Alzheimer’s disease did not receive significant attention until a social revolution took place in the US. But during these years, the dedication of professionals in psychiatric hospitals, such as the Ciempozuelos in Madrid and others scattered across Spain, governed largely by religious congregations, was relevant to patients with what was then commonly referred to as “senile dementia”. The current situation of Spanish research on Alzheimer’s and other related dementias. Since 1960, research into Alzheimer’s disease has increased exponentially all over the world and in Spain it has happened in parallel. At present, there is no prominent biomedical research centre, hospital or university which does not have high-level research units or laboratories, with research teams dedicated to the investigation of Alzheimer’s disease and other dementias in basic and clinical neurosciences. There are large research groups in Spain that cover all areas of research: basic, clinical and social health fields. Basic research covers all aspects, from the research of Alzheimer’s neurodegeneration in human brains to research in animal models of Alzheimer’s disease. Spain has a number of brain banks that collect samples of brain tissue (Madrid, Barcelona, Basque Country) for studies on Alzheimer’s and related diseases (vascular dementia, frontotemporal dementia, Creutzfeldt-Jakob disease etc.). These brain banks are connected to the European network of Brain Banks, most of which are also linked to epidemiological research projects which analyse the development of various types of dementia and neurodegenerative diseases. One example of this is the Reina Sofía Centre and its Vallecas project which carries out an epidemiological follow-up of a population in central Spain, looking for any relationship with dementia and examining people from 65 years of age, through to possible development of dementia, through to post-mortem analysis after death.

SPOTLIGHT ON SPAIN

Country, Maria Wolf-Madrid, etc.) collaborate especially in the development of new forms of comprehensive care for people with dementia, support for families and the implementation of new non-pharmacological methods, technologies and non-hospital based forms of care. They also collaborate with clinical research, encouraging the participation of patients and their families in clinical trials, research technologies and epidemiological studies. Although Spain does not yet have an officially approved National Alzheimer’s Plan (which FAE and other organisations have called for for more than 30 years), it is apparent that some government actions indicate an increase in research in all areas related to Alzheimer’s and other neurodegeneraNicolás Achúcarro (8) in the Alois Alzheimer (7) research team tive diseases. This is reflected in the already In large hospitals, highly relevant clinical themselves, as well as with various foreign approved “Strategy against Neurodegenerastudies focusing on different aspects of centres, especially European centres, includ- tive diseases” (Ministry of Health, 2016) and social health are carried out, including early ing the Joint Programme of the European the future “National Alzheimer Plan”. diagnosis, clinical follow-up, pharmacolog- Union for Research in Neurodegenerative Disical and non-pharmacological treatment. In eases. Additionally, several Spanish research Considering the research agenda as a whole, addition, studies examine genetic determi- consortia (including the CIBERNED network it is necessary to develop a joint programme nants, analysis of blood and cerebrospinal of research centres, which involves univer- to achieve greater efficacy in translating our fluid markers (which assist with diagnosis sities, hospitals, state research centres and knowledge and findings of dementia and and developing knowledge of pathology) the Reina Sofía Alzheimer Reference Centre) associated diseases to facilitate diagnosis, and the use of neuroimaging. Furthermore, are integrated into the worldwide network of prevention and treatment of dementias, as studies are carried out to detect pre-de- Centres of Research Excellence in Alzheimer’s, has taken place in other European counmentia pathological states, mild cognitive with more than 900 researchers participat- tries. The cohesion and coordination of all impairment and other pre-dementia situa- ing since 2012. These teams are also present research projects throughout Spain and tions and mixed Alzheimer’s dementias, as in more than 50 European research projects. the rest of the world is a goal that must well as comorbidity with other conditions be achieved to take the definitive step to such as Type-II diabetes. Collaboration with Alzheimer’s associations overcome dementia, as well as increasing funding for research and development, both In genetic studies, great advances have been Spanish research on Alzheimer’s disease oper- public and private, as well as intensifying made in relation to the importance of the ates in a collaborative manner to analyse all the training of researchers in neurosciences APOE-4 gene, as well as complex studies on the pathways for the development of demen- and clinical physicians who will become several groups of genes (more than 1,000) tia to prevent the disease and to help patients future experts in mental disorders. that indicate different functional groups of and families. global alterations (neurodegenerative, vascular, metabolic etc.) that are associated It is therefore helpful to recognise the imporwith dementia. tance of Alzheimer’s associations such as Fundación Alzheimer España (FAE) and CEAFA Overall, the analysis of high-impact pub- that have collaborated to ensure that patients Profile lications (for example, Medline) show that and families can participate in these studpublications produced in Spain in almost ies. It is also useful to highlight that FAE is Dr Adolfo Toledano is a Board member all fields of research on Alzheimer’s disease committed within its statutes not only to pro(Patrono) of Fundación Alzheimer España and a Chief Investigator at the research are of considerable interest in the viding training, information and assistance to Cajal Institute at the Spanish National field, with more than 11,000 citations in the families, but also to promoting research on Research Council (Consejo Superior de last 10 years. Alzheimer’s disease and dementias. Investigaciones Científicas, CSIC).

Most of the major centres and research teams develop coordinated programmes among

These associations and other foundations (such as the ACE-Barcelona, CITA-Basque

atoledano@cajal.csic.es

Dementia in Europe

SPOTLIGHT ON SPAIN

Barcelona, a city of excellence for Alzheimer’s disease research José Luis Molinuevo and Carolina Minguillón from the Barcelonaβeta Brain Research Center and the Pasqual Maragall Foundation present Barcelona as a vibrant centre for research in the field of Alzheimer’s disease. Barcelona, the host city of the 28th Alzheimer Europe Conference “Making dementia a European priority”, is a hub for Alzheimer’s disease (AD) research in Europe. With a thriving multidisciplinary research community investigating all aspects of AD from basic understanding of disease pathophysiology to engagement of patients and carers, Barcelona is on the front line of the fight against Alzheimer’s. Here, we give an overview of the main centres in Barcelona partnering in European consortia focused on AD.

Barcelonaβeta Brain Research Center The Barcelonaβeta Brain Research Center (BBRC; www.barcelonabeta.org), founded in 2013 and led by Dr José Luis Molinuevo, M.D., is the research institute where the Pasqual Maragall Foundation (fpmaragall.org) carries out all its scientific activities and is dedicated to research on AD prevention. BBRC has a multidisciplinary research team composed of neurologists, neuropsychologists, nurses, biologists, engineers, physicists and computer scientists that bring expertise in AD pathophysiology, genetics, biomarkers, and neuropsychological evaluation, as well as the acquisition, analysis and processing of neuroimaging data (Magnetic Resonance Imaging [MRI] and Positron Emission Tomography [PET]). 52

Dementia in Europe

dementia. The “adaptive” trial design should deliver better results faster and at lower cost. EPAD is funded by the Innovative Medicines Initiative (IMI), an association between the European Union and the European Federation of Pharmaceutical Industries and Associations (EFPIA) (see pages 16–17 for an update on EPAD’s latest achievements).

BBRC also participates in the IMI2-funded Amyloid Imaging for the Prevention of Alzheimer’s Disease (AMYPAD) project. AMYPAD is the largest collaborative project carried out in Europe with the aim of improving the understanding, diagnosis and treatment of AD through Research at BBRC is possible thanks to the β-amyloid PET imaging. AMYPAD will study the altruistic implication of ~3,000 cognitively utility of β-amyloid PET imaging to 1) impact healthy persons (most of them first-degree the clinical workup of persons suspected to descendants of AD patients, aged between 45 have Alzheimer’s, 2) to study the natural hisand 74 years) that participate in the ALFA (for tory of amyloid accumulation in the preclinical ALzheimer and FAmilies) project. ALFA partic- phase and 3) to improve the selection of subipants are thoroughly characterised from a jects for inclusion in prevention trials. BBRC sociodemographic, clinical, genetic, lifestyle co-leads AMYPAD work package 2, which deals and cognitive perspective. with tracer delivery, scan acquisition, quality control, transfer, quantification and, ultimately, The ALFA project represents a valuable cohort sharing of image data across the study. of middle aged participants representing the whole spectrum of risk that leverages with The final IMI-funded project in which BBRC different AD prevention studies and trials. The participates is AETIONOMY, which was estabALFA+ study is a nested longitudinal cohort lished to respond to the need to re-classify that includes 450 participants which undergo diseases according to mechanisms that conrepeated, every 3 years, wet (CSF and blood tribute to disease aetiology at the molecular sample collection) and imaging (MRI, amy- (“omics-“) level rather than the current pheloid and FDG PET) biomarker analyses. This notypic approach. The scientific community information will serve to untangle the nat- believes that a coordinated effort is necessary ural history of the disease and model the to transform drug development and medicine preclinical stages, aiding the development by incorporating the advances in the underof successful trials. standing of molecular and genomic variation of a disease into its diagnosis and treatment. Aside from BBRC-sponsored studies and industry-sponsored prevention clinical tri- It is finally worth mentioning that ALFA has als, the ALFA study is aligned with European recently joined forces with a similar UK-based initiatives that are summarised here. BBRC cohort (PREVENT) to establish TriBEKa (www. co-leads the European Prevention of Alzheim- tribeka.org/), a consortium aimed at underer’s Dementia (EPAD) study, a collaborative standing the specific brain changes that take research project with the main purpose of place during middle age. To achieve this, an developing the infrastructure for performing open-access neuroimaging platform will be proof of concept trials for the prevention of generated to help understand the changes AD dementia. that occur in the brain up to 20 years prior to the appearance of the first symptoms. The For this purpose, from a single pan-Euro- platform will obtain data from over 1,000 pean EPAD registry, participants are invited to healthy participants of between 40 and 65 join the EPAD longitudinal cohort. From this years of age, from the prevention cohorts of cohort, selected participants will be invited different centres: ALFA in Spain, PREVENT in to join in the EPAD “adaptive” trial for devel- the UK, and FINGER in Finland. All the inforoping drugs designed to prevent Alzheimer’s mation collected in the project will be

SPOTLIGHT ON SPAIN

available to the global scientific community, through the data exchange platform known as Global Alzheimer’s Association Interactive Network (GAAIN). The consortium is funded by the Alzheimer’s Association and an international anonymous charity foundation.

Hospital Clínic of Barcelona The Alzheimer’s Disease and other Cognitive Disorders Unit (ADCD) at the Hospital Clínic of Barcelona (www.hospitalclinic.org), linked to the Institut d’Investigacions Biomèdiques Augusti Pi i Sunyer (IDIBAPS) and the University of Barcelona, is a multidisciplinary clinical and translational group of 20 professionals. Led by Dr Raquel Sánchez-Valle, MD, it is focused on the diagnosis, management and research of neurodegenerative cognitive disorders. ADCD participates in neuropathological studies in neurodegenerative dementias in collaboration with the Neurological Tissue Bank at the same centre (www.clinicbiobanc.

org) and BrainNet Europe. ADCD participates in several international projects and/ or consortia funded by international or EU agencies. The Dominant Inherited Alzheimer’s Network (DIAN) that aims to characterise, design and manage interventional therapeutic trials for individuals with and at risk of autosomal dominant AD; the Genetic Frontotemporal dementia Initiative (GENFI) and the EU Joint Program JPND PreFrontALS that studies genetic Frontotemporal dementia (FTD); the EU-Early onset dementia consortium, focused on the study of genetic markers and causes of early onset dementia; the EU EIT-Health AD Prediction Service that evaluates the accuracy and performance of a prototype app that tracks gamified daily routines in order to estimate at an individual level the risk of cognitive worsening in subsequent years; the IMI-AETIONOMY (see above).

Sant Pau Memory Unit The Sant Pau Memory Unit (www.santpaumemoryunit.com) at the Hospital de Sant Pau is a multidisciplinary group of 35 professionals led by Alberto Lleó, M.D. The Unit is composed of neurologists, neuropsychologists, nurses, biologists, engineers and lab technicians devoted to medical care and translational research in the field of dementia. The Unit offers highly specialised medical care and clinical trials to patients with AD and other dementias, such as FTD and dementia with Lewy bodies (DLB).

The Unit has a specific programme for the detection of AD in Down syndrome (DS). The Finally, in collaboration with BBRC, the Unit combines clinical care with clinical and H2020 Medit-Aging investigates the poten- translational research activities. Recently, the tial of meditation to promote mental health Unit has launched two large research cohorts: and wellbeing in the ageing population and The SPIN (Sant Pau Initiative in Neurodegenerprevent AD; the EU Joint Program EURO-SCD ative diseases) cohort for biomarker discovery with the objective to create a transnational, and validation in AD, FTD and DLB, and DABNI harmonized definition and assessment (Down Barcelona Neuroimaging Initiative) protocol of subjective decline for early inter- for characterisation of AD biomarkers in DS. vention trials.

The BBRC team in Barcelona

Dementia in Europe

In addition to several national studies, the Unit has been actively involved in several European and international projects, such as EADB (European Alzheimer’s Disease DNA Bank) aimed at disentangling the genetic basis of AD through the generation of GWASbased population data; the EOAD (EU-Early onset dementia) which investigates the genetic causes of early-onset AD; T21 Genetic Consortium, which focuses on DS genetics; and the BIOMARKAPD, which investigated harmonization protocols for CSF biomarkers. The Unit receives funding from national and international agencies including the Alzheimer’s Association, Jêrome-Lejeune Foundation, Michael J Fox Foundation and the National Institute of Health.

The initial Alzheimer’s Education Center established in 1991 has evolved based on the changing needs and demands of patients and their families, and also based on the novel evidence-based therapies and management techniques. The clinical database of Fundació ACE contains more than 23,000 clinical records and new data from approximately 1,700 new patients are added every year. This database also contains important longitudinal clinical data and has been open to accredited researchers worldwide since 2014 (GAAIN initiative).

ACE research encompasses diverse fields such as genomics, genome-wide association studies, molecular epidemiology, phenomics, biomarkers, neuroimaging, social legal and ethical research, robotics, and brain training. ACE participates as a partner in numerous national and international projects or collaborations. It is a member of the Cohorts for Heart and Aging Research in Genomic BARCELONA ALZHEIMER TREATMENT & RESEARCH CENTER Epidemiology (CHARGE) consortium, the International Genomics of Alzheimer’s Project Fundació ACE (IGAP) consortium, the European Alzheimer Disease Consortium (EADC), the European Fundació ACE, Institut Català de Neurocièn- Lewy Body Disease consortium (eDLB), the cies Aplicades (ACE) (www.fundacioace.org) European Early-Onset Dementia consortium is a non-profit organisation, whose mission (euEADB) and the Alzheimer’s Disease Neuis to manage dementia in a multidisciplinary roimaging Initiative (ADNI), among others. way. ACE has developed an integrated care model that includes diagnosis, therapy, fol- ACE also participates in different European low-up care, day-care and a day hospital in the research projects such as ICTUS (FP6), Robotic context of an active clinical research program. Assistant for MCI Patients (RAMCIP, H2020),

28th Alzheimer Europe Conference

Making dementia a European priority Barcelona, Spain 29–31 October 2018 www.alzheimer-europe.org/conferences

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Ethical Framework for Predictive Diagnosis of Alzheimer’s Disease Quality of Life for Subjects at Risk and Their Loved Ones (PreDADQoL, JPND) or EXIT (Nanomed III). Of note, ACE is the coordinating centre of two European projects from the Horizon 2020 Innovative Medicine Initiative (H2020-IMI2): Alzheimer’s Disease Apolipoprotein Pathology for Treatment Elucidation and Development (ADAPTED, H2020-IMI2) and Models of Patient Engagement for Alzheimer’s Disease (MOPEAD, H2020-IMI2) (a special supplement to this magazine highlights the aims and achievements of the MOPEAD project). Barcelona, a hub of excellence In summary, it is clear that Barcelona is truly a hub of excellence for Alzheimer’s research thanks to a critical mass of investigators and healthcare professionals in diverse fields such as medicine, biology, psychology, engineering and social care. The above described four research centres keep on developing partnership to increase their degree of collaboration and alignment. It should be emphasised that without the engaged participation of thousands of persons from Barcelona and surrounding areas the studies summarised here would not be possible. The honour of hosting of the 28th Alzheimer Europe Conference “Making dementia a European priority”, will only serve to further the potential for future collaborative projects with our European colleagues.

BULGARIA – SOFIA Alzheimer Bulgaria BULGARIA AUSTRIA – SOFIA– VIENNA Alzheimer Austria Alzheimer Bulgaria AUSTRIA – VIENNA BULGARIA Alzheimer - VARNAAustria FoundationBELGIUM Compassion Alzheimer – BRUSSELS BULGARIA Ligue - VARNA Nationale Alzheimer Liga – BRUSSELS FoundationBELGIUM Compassion Alzheimer Nationale Alzheimer Liga CROATIA –Ligue ZAGREB BOSNIA & HERZEGOVINA - SARAJEVO Alzheimer Croatia Udruženje AiR CROATIA –BOSNIA ZAGREB & HERZEGOVINA - SARAJEVO Alzheimer Croatia Udruženje AiR BULGARIA – SOFIA CYPRUS – LARNACA Bulgaria PancyprianAlzheimer Alzheimer Association BULGARIA – SOFIA CYPRUS – LARNACA Alzheimer Bulgaria PancyprianBULGARIA Alzheimer Association - VARNA CZECH REPUBLIC – PRAGUE Foundation Compassion Alzheimer BULGARIASociety - VARNA Czech Alzheimer’s Foundation Compassion Alzheimer CZECH REPUBLIC – PRAGUE CROATIA Society – ZAGREB Czech Alzheimer’s Alzheimer Croatia DENMARKCROATIA – HELLERUP – ZAGREB Alzheimerforeningen Alzheimer Croatia DENMARKCYPRUS – HELLERUP – LARNACA Pancyprian Alzheimer Association Alzheimerforeningen CYPRUS – LARNACA FINLAND – HELSINKI Pancyprian Alzheimer Association MuistiliittoCZECH REPUBLIC – PRAGUE FINLAND –Czech HELSINKI Alzheimer’s Society MuistiliittoCZECH REPUBLIC – PRAGUE Europe Czech Alzheimer’s Society Members FRANCE –Alzheimer PARIS – HELLERUP AssociationDENMARK France Alzheimer Alzheimerforeningen FRANCE – PARIS DENMARK – HELLERUP Alzheimer Europe Members AssociationAlzheimerforeningen France Alzheimer GERMANY FINLAND – BERLIN– HELSINKI Muistiliitto Gesellschaft e.V. Deutsche Alzheimer HUNGARY Alzheimer Europe Members FINLAND GERMANY – BERLIN– HELSINKI HungarianMuistiliitto Alzheimer Society Deutsche Alzheimer Gesellschaft e.V. FRANCE – PARIS GREECE THESSALONIKI HUNGARY GREECE –– THESSALONIKI Association France Alzheimer Panhellenic Federation of FRANCE – PARIS Hungarian Alzheimer Society Panhellenic Federation of Alzheimer’s Alzheimer’s Alzheimer Europe Members Alzheimer Europe Members GREECE –and THESSALONIKI Association France Alzheimer Disease and Related DiseaseAlzheimer Related Disorders Disorders Europe Members – BERLIN PanhellenicGERMANY Federation of Alzheimer’s GREECE – THESSALONIKI Alzheimer Gesellschaft e.V. ICELANDand -Deutsche REYKJAVIK Disease Related Disorders Alzheimer GERMANY – BERLIN Europe Members Panhellenic of Alzheimer’s HUNGARY BUDAPEST The Alzheimer’s Association of Iceland HUNGARY ––Federation BUDAPEST Deutsche Alzheimer Gesellschaft e.V. Social Cluster Cluster Association Disease andGREECE Related Disorders Social Association – THESSALONIKI

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ISRAEL – RAMAT GAN IRELAND – DUBLIN DUBLIN IRELAND IRELAND –––DUBLIN IRELAND DUBLIN IRELAND –- REYKJAVIK DUBLIN ICELAND REYKJAVIK IRELAND –ICELAND DUBLIN EMDA – The Alzheimer’s of The Alzheimer Society ofAssociation Ireland ICELAND The Alzheimer Society of Ireland ---REYKJAVIK The Alzheimer Society of Ireland ICELAND REYKJAVIK The Alzheimer’s Alzheimer Society of Ireland Alzheimer’s Association of Iceland Iceland The Alzheimer Society of Ireland The Alzheimer Society of Ireland The Association of Israel The Alzheimer’s Association of Iceland

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CZECH REPUBLIC – PRAGUE Alzheimer Croatia CZECH REPUBLIC – PRAGUE CYPRUS LARNACA Czech Alzheimer’s Society CYPRUS –– LARNACA CYPRUS – LARNACA Czech Alzheimer’s Society CZECH REPUBLIC – PRAGUE Pancyprian Alzheimer Association CYPRUS LARNACA Pancyprian Alzheimer Association CYPRUS –– LARNACA – LARNACA Pancyprian AlzheimerCYPRUS Association Czech Alzheimer’s Society Pancyprian Alzheimer Association Pancyprian Alzheimer Association Pancyprian Alzheimer Association DENMARK – HELLERUP DENMARK – HELLERUP Alzheimerforeningen CZECH REPUBLIC REPUBLIC PRAGUE CZECH –– PRAGUE DENMARK – HELLERUP CZECH REPUBLIC REPUBLIC PRAGUE CZECH –– PRAGUE CZECH REPUBLIC –Society PRAGUE Alzheimerforeningen Czech Alzheimer’s Alzheimer’s CZECH REPUBLIC –Society PRAGUE Czech Society Alzheimerforeningen Czech Alzheimer’s Alzheimer’s Czech Society Czech Alzheimer’s Society Czech Alzheimer’s Society FINLAND – HELSINKI FINLAND DENMARK– ––HELSINKI HELLERUP Muistiliitto FINLAND DENMARK HELLERUP DENMARK– ––HELSINKI HELLERUP DENMARK HELLERUP DENMARK – HELLERUP Muistiliitto Alzheimerforeningen DENMARK – HELLERUP Alzheimerforeningen Muistiliitto Alzheimerforeningen AlzheimerforeningenAlzheimerforeningen Alzheimerforeningen FRANCE – PARIS FRANCE FINLAND–––PARIS HELSINKI FINLAND HELSINKI Association France Alzheimer FINLAND – HELSINKI FRANCE Association France Alzheimer FINLAND–––PARIS HELSINKI Muistiliitto Muistiliitto FINLAND HELSINKI Muistiliitto FINLAND – HELSINKI Association France Alzheimer Muistiliitto Muistiliitto Muistiliitto – BERLIN FRANCE –– PARIS PARIS GERMANY – BERLIN GERMANY FRANCE FRANCE – Alzheimer PARIS Deutsche Gesellschaft e.V. Association France Alzheimer Deutsche Alzheimer Gesellschaft e.V Alzheimer Association France GERMANY – BERLIN FRANCE –– PARIS PARIS Association France Alzheimer FRANCE FRANCE – PARIS Deutsche Alzheimer Gesellschaft e.V. Association France Alzheimer Alzheimer Association France Association France Alzheimer GREECE – THESSALONIKI GERMANY BERLIN GERMANY –– BERLIN

GERMANY –Federation BERLIN Gesellschaft Panhellenic of Alzheimer’s Deutsche Alzheimer Alzheimer e.V. Deutsche Gesellschaft e.V. Deutsche Alzheimer Gesellschaft e.V.

Disease and Related Disorders GREECE – THESSALONIKI GERMANY BERLIN GERMANY –– BERLIN GERMANY – BERLIN Panhellenic Federation of Alzheimer’s Deutsche Alzheimer Alzheimer Gesellschaft e.V. Deutsche Gesellschaft e.V. GREECE THESSALONIKI GREECE –– THESSALONIKI Deutsche Alzheimer e.V. of Alzheimer’s GREECE – THESSALONIKI Disease and Related Gesellschaft Disorders Panhellenic Federation Panhellenic Federation of Alzheimer’s Panhellenic of Alzheimer’s Disease and andFederation Related Disorders Disorders Disease Related Disease and Related Disorders

GREECE –– THESSALONIKI THESSALONIKI GREECE GREECE – THESSALONIKI Panhellenic Federation of of Alzheimer’s Alzheimer’s Panhellenic Federation Panhellenic of Alzheimer’s Disease and andFederation Related Disorders Disorders Disease Related Disease and Related Disorders

HUNGARY PanhellenicAlzheimer Federation of Alzheimer’s Hungarian Society Alzheimer Europe Members GREECE – THESSALONIKI IRELAND DUBLIN ICELAND –--Disease REYKJAVIK and Related Disorders ICELAND REYKJAVIK Alzheimer Europe Members ICELAND REYKJAVIK Federation ofIceland Alzheimer’s ICELAND -–Panhellenic REYKJAVIK The Alzheimer Society of Ireland Alzheimer’s Association of ICELAND REYKJAVIK GREECEAssociation – THESSALONIKI TheAlzheimer’s Alzheimer’s of Iceland The Association of ICELAND - REYKJAVIK Disease and Related Disorders The Alzheimer’s Association ofIceland Iceland Alzheimer Iceland Panhellenic of Alzheimer’s HUNGARY –Federation BUDAPEST The Alzheimer’s Association of Iceland Social Cluster Association Disease and Related Disorders

The Alzheimer’s Association of Iceland

ISRAEL –– RAMAT RAMAT GAN GAN ISRAEL ISRAEL – RAMAT GAN ISRAEL RAMAT GAN Association of ITALY EMDA ––MILAN The Alzheimer’s

EMDA––The TheAlzheimer’s Alzheimer’sAssociation Association of EMDA ITALY –– MILAN ROME MILAN EMDA Associationof of ITALY Federazione Alzheimer Italia Israel – The Alzheimer’s Israel ITALY ITALY –––MILAN MILAN Israel ITALY MILAN Israel Alzheimer Uniti Onlus Italia Federazione Alzheimer Italia Federazione Alzheimer Federazione Alzheimer Italia Federazione Alzheimer Italia Federazione Alzheimer Italia ITALY –– MILAN ROME MILAN ITALY ITALY ––MILAN ITALY MILAN Alzheimer Onlus Italia Federazione Alzheimer Italia Federazione Alzheimer JERSEY ST HELIER Uniti ITALY –––ROME ROME Federazione ITALY FederazioneAlzheimer AlzheimerItalia Italia ITALY – ROME

ITALY ––ROME ITALY ROME Jersey Alzheimer’s Association Alzheimer Uniti Onlus Onlus Alzheimer Uniti Onlus Alzheimer Uniti Alzheimer Onlus AlzheimerUniti Uniti Onlus JERSEY ST HELIER ITALY ––ROME

ITALY––ROME ROME ITALY ITALY –Alzheimer’s ROME Jersey Association Alzheimer Uniti Onlus Onlus Alzheimer Uniti Alzheimer AlzheimerUniti UnitiOnlus Onlus

LUXEMBOURG – LUXEMBOURG JERSEY ––– ST ST HELIER HELIER JERSEY ST HELIER JERSEY JERSEY ––ST JERSEY STHELIER HELIERAssociation Association Luxembourg Alzheimer Jersey Alzheimer’s Alzheimer’s Jersey Association Jersey Alzheimer’s LUXEMBOURG – LUXEMBOURG JERSEY ––Association ST HELIER HELIER JERSEY ST Jersey Alzheimer’s Association JERSEY JERSEY––ST STHELIER HELIER

Association Luxembourg Alzheimer Jersey Alzheimer’s Alzheimer’s Association Jersey Association Jersey JerseyAlzheimer’s Alzheimer’sAssociation Association

MALTA – MSIDA LUXEMBOURG – LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG ––––LUXEMBOURG LUXEMBOURG LUXEMBOURG MALTA – MSIDA–– Alzheimer LUXEMBOURG LUXEMBOURG Malta Dementia Society LUXEMBOURG LUXEMBOURG Association Luxembourg LUXEMBOURG ––Alzheimer LUXEMBOURG Association Luxembourg LUXEMBOURG LUXEMBOURG Malta Dementia Society Association Luxembourg Alzheimer AssociationAssociation Luxembourg Alzheimer Luxembourg Alzheimer Association AssociationLuxembourg LuxembourgAlzheimer Alzheimer

MONACO –MONACO MONTE-CARLO MALTA MALTA–––MSIDA MSIDA MALTA MSIDA – MONTE-CARLO MALTA MSIDA MALTA ––MSIDA MSIDA MALTA – MSIDA MALTA –Society MALTA MSIDA MALTA –Association MSIDA Malta Dementia Dementia AMPA - –Association Monégasque pour pour AMPA -Dementia Monégasque Malta Dementia Society Malta Society Malta Society Malta Dementia Society Malta Dementia Society Malta Dementia Society Malta Dementia Society la sur recherche sur la maladie d’Alzheimer la recherche la maladie d’Alzheimer MONACO – MONTE-CARLO MONTE-CARLO MONACO ––MONACO MONTE-CARLO MONACO MONACO MONTE-CARLO –––MONTE-CARLO MONACO MONTE-CARLO MONTE-CARLO NETHERLANDS – AMERSFOORT MONACO –––MONACO MONTE-CARLO AMPA - Association Association Monégasque pour AMPA Monégasque pour MONACO MONTE-CARLO AMPA Monégasque pour la AMPA -–--Association Monégasque pour NETHERLANDS AMERSFOORT AMPA --- Association Association Monégasque pour AMPA Association Monégasque pour AMPA Association Monégasque pour Alzheimer Nederland la recherche sur la la maladie maladie d’Alzheimer larecherche recherche sur d’Alzheimer AMPA --Association Monégasque pour la sur la maladie d’Alzheimer recherche sur la maladie d’Alzheimer AMPA Association Monégasque pour la recherche sur la maladie d’Alzheimer Alzheimer Nederland la recherche recherche sur la la maladie maladie d’Alzheimer la sur d’Alzheimer lala recherche recherchesur surlalamaladie maladied’Alzheimer d’Alzheimer NORWAY – OSLO NETHERLANDS AMERSFOORT NETHERLANDS –– AMERSFOORT NETHERLANDS NETHERLANDS––AMERSFOORT AMERSFOORT

MONTENEGRO ––PODGORICA Nasjonalforeningen Alzheimer NederlandDemensforbundet Alzheimer Nederland NORWAY –Alzheimer OSLO NETHERLANDS AMERSFOORT Nederland NETHERLANDS AMERSFOORT Nederland NETHERLANDS –––AMERSFOORT NVO FuturaAlzheimer NETHERLANDS AMERSFOORT Nasjonalforeningen Demensforbundet Alzheimer Nederland Nederland Alzheimer Alzheimer AlzheimerNederland Nederland

POLAND NORWAY–––WARSAW OSLO NORWAY OSLO NORWAY ––OSLO NORWAY OSLO Association Polish Alzheimer’s Nasjonalforeningen Demensforbundet

Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet NETHERLANDS – AMERSFOORT Demensforbundet POLAND WARSAW NORWAY–––Nasjonalforeningen OSLO NORWAY OSLO Alzheimer Nederland NORWAY – OSLO NORWAY – OSLO Association Polish Alzheimer’s Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet Nasjonalforeningen PORTUGAL – LISBON POLAND ––Demensforbundet WARSAW POLAND WARSAW Nasjonalforeningen Demensforbundet POLAND – WARSAW Alzheimer PortugalAssociation Polish Alzheimer’s Alzheimer’s Association Polish Polish Alzheimer’s Association

PORTUGAL – LISBON POLAND –– WARSAW WARSAW POLAND POLAND – Portugal WARSAW PORTUGAL LISBON Alzheimer Polish Alzheimer’s Alzheimer’s Association PORTUGAL –– LISBON Polish Association PORTUGAL – LISBON AlzheimerAssociation Portugal Polish Alzheimer’s Alzheimer Portugal Alzheimer Portugal

PORTUGAL –– LISBON LISBON PORTUGAL PORTUGAL – LISBON Alzheimer Portugal Portugal Alzheimer Alzheimer Portugal

POLAND – WARSAW Polish Alzheimer’s Association SLOVAKIA BRATISLAVA ROMANIA –LISBON BUCHAREST PORTUGAL –– PORTUGAL – LISBON ROMANIA BUCHAREST ROMANIA –Alzheimer BUCHAREST Alzheimer Portugal Slovak Alzheimer’s Society Societatea Alzheimer Portugal Societatea Alzheimer ROMANIA – BUCHAREST PORTUGAL –Alzheimer LISBON Societatea Societatea Alzheimer Alzheimer Portugal

Societatea Alzheimer

SPAIN – MADRID SLOVENIA LJUBLJANA SLOVENIA – LJUBLJANA SLOVENIA –– LJUBLJANA SPAIN –– PAMPLONA MADRID SPAIN MADRID SLOVENIA –Alzheimer LJUBLJANA Fundación España Association “Forget-me-not” Association “Forget-me-not” Association “Forget-me-not” SPAIN – MADRID C.E.A.F.A. Fundación Alzheimer España España Association “Forget-me-not” Fundación Alzheimer Fundación Alzheimer España SPAIN – PAMPLONA MADRID

SPAIN – MADRID SPAIN – Alzheimer MADRID España SPAIN – MADRID C.E.A.F.A. Fundación SWEDEN –Alzheimer LUND España Fundación SPAIN PAMPLONA SPAIN –– PAMPLONA Fundación Alzheimer España Fundación Alzheimer España SPAIN – PAMPLONA Alzheimerföreningen i Sverige C.E.A.F.A. C.E.A.F.A. C.E.A.F.A. SWEDEN – LUND SPAIN –– PAMPLONA PAMPLONA SPAIN SPAIN – PAMPLONA i Sverige Alzheimerföreningen C.E.A.F.A. SPAIN – PAMPLONA C.E.A.F.A. C.E.A.F.A. – SWEDEN – LUND STOCKHOLM LUND SWEDEN

C.E.A.F.A SWEDEN – LUND Demensförbundet Alzheimerföreningen Sverige Alzheimerföreningen ii Sverige SWEDEN –– LUND STOCKHOLM LUND Alzheimerföreningen i Sverige SWEDEN SWEDEN – LUND Demensförbundet Alzheimerföreningen Sverige Alzheimerföreningen ii Sverige SWEDEN – LUND i Sverige Alzheimerföreningen

SWITZERLAND – YVERDON-LES-BAINS SWEDEN STOCKHOLM SWEDEN –– STOCKHOLM Alzheimer Sverige SWEDEN STOCKHOLM Association Alzheimer Suisse Demensförbundet SWITZERLAND – YVERDON-LES-BAINS SWEDEN –––STOCKHOLM STOCKHOLM Demensförbundet SWEDEN SWEDEN – STOCKHOLM Demensförbundet Association Alzheimer Suisse Demensförbundet Demensförbundet Demensförbundet

SWEDEN – STOCKHOLM TURKEY – ISTANBUL SWITZERLAND YVERDON-LES-BAINS Demensförbundet SWITZERLAND –– YVERDON-LES-BAINS TURKEY – ISTANBUL SWITZERLAND YVERDON-LES-BAINS SWITZERLAND –– YVERDON-LES-BAINS SWITZERLAND – YVERDON-LES-BAINS Alzheimer Vakfı Association Alzheimer Suisse SWITZERLAND – YVERDON-LES-BAINS Association Alzheimer Suisse Alzheimer Vakfı Association Alzheimer Suisse Association Alzheimer Suisse Association Alzheimer Suisse Association Alzheimer Suisse SWITZERLAND – BERN UNITED KINGDOM – EDINBURGH TURKEY ISTANBUL Association Alzheimer Suisse TURKEY ––KINGDOM ISTANBUL UNITED – EDINBURGH TURKEY ISTANBUL TURKEY ––ISTANBUL ISTANBUL TURKEY –– Alzheimer Scotland Vakfı TURKEY ISTANBUL Alzheimer Vakfı Alzheimer Scotland Vakfı Alzheimer Vakfı Alzheimer Vakfı Alzheimer Vakfı TURKEY – ISTANBUL UNITED KINGDOM KINGDOM –– EDINBURGH LONDON EDINBURGH UNITED Alzheimer Vakfi– EDINBURGH UNITED KINGDOM UNITED KINGDOM LONDON Alzheimer’s Society EDINBURGH Alzheimer Scotland Alzheimer Scotland UNITED KINGDOM –– EDINBURGH Alzheimer Scotland UNITED KINGDOM Alzheimer’s Society – EDINBURGH Alzheimer Scotland Alzheimer Scotland Alzheimer Scotland UNITED KINGDOM LONDON UNITED KINGDOM – EDINBURGH UNITED KINGDOM –– LONDON UNITED KINGDOM – LONDON Alzheimer’s Society Alzheimer’s AlzheimerSociety Scotland UNITED KINGDOM – LONDON LONDON Alzheimer’s Society – UNITED KINGDOM UNITED KINGDOM Alzheimer’s Society – LONDON Alzheimer’s Society Alzheimer’s Society UNITED KINGDOM – LONDON Alzheimer’s Society

RO Soc RO Soc SLO Slo SLO Slo SLO Ass SLO Ass SPA Fun SPA Fun SPA C.E SPA C.E SW Alz SW Alz SW De SW De SW Ass SW Ass TU Alz TU Alz UN Alz UN Alz UN Alz UN Alz

29th Alzheimer Europe Conference Making valuable connections The Hague, Netherlands 23â&#x20AC;&#x201C;25 October 2019 www.alzheimer-europe.org/conferences #29AEC